Friday, December 28, 2012
Brentwood United Methodist Church
309 Franklin Rd.
Brentwood, TN 37027
Visitation: 10:00 am
Service: 11:00 am
Memorials may be sent to the American Cancer Society or Brentwood United Methodist Church
Brentwood Roesch Patton Funeral Home has charge.
Hotels nearby:
Hampton Inn and Suites 615.771.7225
7141 South Springs Dr.
Franklin, TN
Free WiFi, Free Breakfast
Drury Plaza Hotel 615.771.6778
Marriott Cool Springs 615.261.6100
Sunday, December 23, 2012
Saturday, December 22, 2012
Tom is in Heaven
Tom passed away peacefully at 9 tonight. Once arrangements are made I will share them here.
Thank you for your prayers and love.
Thank you for your prayers and love.
I don't even know what to say
Dr. Rutland called me about 6:30 this morning and told me Tom was "bleeding out". Since his liver was not making clotting factors he wasn't holding on to anything they were giving him. They had given him 4 units of blood by the time he called me. He basically told me Tom would not make it and he wasn't even sure I could get to the hospital in time. We talked about what measures to take and all I could tell him was I wanted to be here. I threw on clothes and sped here. Tom is such a fighter - he is still hanging on. He is sleeping and comfortable. My parents came up and so did Tom's sisters, Debbie and Cathy. I called my co-worker, Becky, on the way to the hospital this morning and she met me here. She and my boss, Nancy, have been here all day and I understand several others have come that I did not see. I haven't wanted to leave Tom.
This is certainly not the way we expected this to turn out. I think Tom has known. He has suffered so much and it is brutal to watch him today. I know there is a wonderful place waiting for him and we will all get through this.
Please pray for peace for Tom and all of us.
This is certainly not the way we expected this to turn out. I think Tom has known. He has suffered so much and it is brutal to watch him today. I know there is a wonderful place waiting for him and we will all get through this.
Please pray for peace for Tom and all of us.
Friday, December 21, 2012
STILL IN NASHVILLE
Dr. Rutland called and there are still no beds available. Actually - there was a bed available for about 30 minutes but someone else got it!
Dr. Rutland is working tomorrow and will keep trying. He said Tom's BP and heart rate are great so now is the time to go. They are giving him potassium and magnesium too. He's pretty lethargic today so hopefully all of this stuff will help perk him up.
He continues to say he needs to get out of the bed/room. He wants to go home. I am trying to keep him encouraged but it's going to be rough again tonight.
Dr. Rutland is working tomorrow and will keep trying. He said Tom's BP and heart rate are great so now is the time to go. They are giving him potassium and magnesium too. He's pretty lethargic today so hopefully all of this stuff will help perk him up.
He continues to say he needs to get out of the bed/room. He wants to go home. I am trying to keep him encouraged but it's going to be rough again tonight.
WAITING
How many of these entries have I titled "waiting"? I remember this feeling . . . I had it the day we waited to find out if Tom would get transferred to UAB the first time (after being turned down at Vanderbilt and Memphis). Then, again, when we waited to find out if Tom would be eligible for the transplant evaluation at UAB - I cried when we got that good news (and throughout the evaluation: test after test after test). We waited again to find out if they would place Tom on the transplant list. You think I would be used to it by now but my stomach is still turning and I feel like I need to be doing something, yet totally helpless.
Tom was so happy to see Dennis last night, he cried. He asks everyone to help him get out of "this room". Dennis stayed as long as he could and then came back this morning (which is why I haven't been to the hospital yet). Tom and I spent most of the night with an open phone line to each other. He just kept repeating his plan to get out of the room today, get in the wheel chair, then in the truck and to the house. The four of us (including the puppies) would wait at the house until a bed is available at UAB and the ambulance will come and pick him up. He said that over and over and over again. I kept telling him to rest his voice. We did get some sleep though. I think the nurse hung up the phone about 2:30 am when they went in to change his dressings.
This morning his nurse said he is doing well. Dennis helped him eat some fruit for breakfast. I guess they decided against IV nutrition and are giving him shakes instead. He told me last night they were not very good but he was drinking them anyway - my hero! They are planning to give him more blood and albumin today - that will help because I'm not sure how I'm going to tell him he can't leave "this room" if a UAB bed is not available. It takes a while to get the blood so that will hold him there. I'm trying to play along with his plan but I'm afraid it will break him if he can't leave today.
The ICU beds have a "chair" setting so I asked the nurse last night if we could use that setting to help Tom feel like he was sitting in a chair. His back is really hurting him. He did pretty well in the chair position for about 25 minutes. I think he figures if he can get in a wheelchair, he can escape. I'd like to at least get him to sit on the side of the bed - I'll see what Dr. Rosen thinks about that. A couple of the stitches have already ripped out so I don't think a lot of moving around is a good idea. Tom doesn't seem to get that. There is a lot of fluid draining from the tear so in some ways that is good - except that they keep giving him more to keep him from being dehydrated, very little of anything seems to be staying in his veins.
I faxed more blood tests to UAB this morning. They are gradually getting better. He was still a 27 with what I sent yesterday so that's good. Regardless, they have to submit something on the 31st because that's when the existing MELD expires. I'm trying not to think about the fact that they may not consider him strong enough for surgery and deactivate him - I kinda don't think they would do that, I think they would go ahead and submit the blood tests and then make a decision once a liver was available - at least he would be at UAB. I know he will get there eventually - he has to.
It seems every devotion is about suffering and waiting and patience. Tom is in God's Hands, I trust Jesus - He hasn't failed me!
Tom was so happy to see Dennis last night, he cried. He asks everyone to help him get out of "this room". Dennis stayed as long as he could and then came back this morning (which is why I haven't been to the hospital yet). Tom and I spent most of the night with an open phone line to each other. He just kept repeating his plan to get out of the room today, get in the wheel chair, then in the truck and to the house. The four of us (including the puppies) would wait at the house until a bed is available at UAB and the ambulance will come and pick him up. He said that over and over and over again. I kept telling him to rest his voice. We did get some sleep though. I think the nurse hung up the phone about 2:30 am when they went in to change his dressings.
This morning his nurse said he is doing well. Dennis helped him eat some fruit for breakfast. I guess they decided against IV nutrition and are giving him shakes instead. He told me last night they were not very good but he was drinking them anyway - my hero! They are planning to give him more blood and albumin today - that will help because I'm not sure how I'm going to tell him he can't leave "this room" if a UAB bed is not available. It takes a while to get the blood so that will hold him there. I'm trying to play along with his plan but I'm afraid it will break him if he can't leave today.
The ICU beds have a "chair" setting so I asked the nurse last night if we could use that setting to help Tom feel like he was sitting in a chair. His back is really hurting him. He did pretty well in the chair position for about 25 minutes. I think he figures if he can get in a wheelchair, he can escape. I'd like to at least get him to sit on the side of the bed - I'll see what Dr. Rosen thinks about that. A couple of the stitches have already ripped out so I don't think a lot of moving around is a good idea. Tom doesn't seem to get that. There is a lot of fluid draining from the tear so in some ways that is good - except that they keep giving him more to keep him from being dehydrated, very little of anything seems to be staying in his veins.
I faxed more blood tests to UAB this morning. They are gradually getting better. He was still a 27 with what I sent yesterday so that's good. Regardless, they have to submit something on the 31st because that's when the existing MELD expires. I'm trying not to think about the fact that they may not consider him strong enough for surgery and deactivate him - I kinda don't think they would do that, I think they would go ahead and submit the blood tests and then make a decision once a liver was available - at least he would be at UAB. I know he will get there eventually - he has to.
It seems every devotion is about suffering and waiting and patience. Tom is in God's Hands, I trust Jesus - He hasn't failed me!
Thursday, December 20, 2012
FRESH START
OK, so after crying our eyes out last night, Tom and I are a little better this morning. He seemed to have a restful night. He had the nurse help call me twice - both times he repeatedly told me he had to "get out of this room", he "wasn't going to make it" if he stayed. I'm glad his intuition is not right. It didn't exactly make for a restful night for me.
This morning he was still trying to figure out a plan to get out of the room. He did, however, answer some different questions correctly for the nurse. All of the usual, day, date, year, President questions,plus several others he got right so that is encouraging.
I missed Dr. Dunn, who is always early, but was able to catch Dr. Rutland. Tom will get more blood today (if you're counting how much he's received lately, let me know). I think this will make about 12 units. His Potassium is 3.3 - still low, but Dr. Rutland and I agreed it was good - considering . . .
They are concerned about his nutrition. Tom is not eating very much (except grapes and melon) and he needs more protein. He didn't want his eggs this morning but he had two servings of milk. They may give him IV nutrition - the nutritionist will see him today. I helped get his wound dressings changed while I was there. His skin is so thin, several of the stitches he got yesterday have already ripped out. This new tear is in a really bad place on his lower abdomen. Dr. Rosen's nurse, Meredith, came in shortly after to check on the stitches and cleaned and changed the dressing again. Tom adores Dr. Rosen and Meredith so it always calms him when they see him. I had given Meredith a heads up that Tom wants to get up and get out of the room so she told him he needed to stay in bed for another day. Tom seemed to accept that OK.
Dr. Rutland called UAB and they are still on diversion. He left a message for the Liver Center and they called back right before I left. Dr. Pearman (resident intensivist) put the call through to Dr. Rutland's office. I don't know if anything will transpire from that conversation. We're all hoping that with the holidays, they will discharge some patients. He still needs to transfer to their ICU if he's in the ICU here. I like him ICU but I feel certain they will move him out as soon as they can.
I just talked to our Transplant Coordinator at UAB. I sent new blood tests today and his MELD is 27. These tests are good and can be submitted up to tomorrow night at midnight. The "new thing" is for the doctors to see the patient to make sure they are transplantable before submitting a score that will place him this high on the list. Because Tom has been at the bottom and is now suddenly at the top, they want to make sure he is not "too sick". I am very worried that since he has not been on his feet in a while that they will not want to transplant him. Everyone asks the question: is everyone that gets a transplant able to walk around, especially if you have to be so sick before getting a liver?? Well, most folks probably haven't had all of the challenges Tom has had with the leg wounds and such. If Tom had been on his feet more prior to this last set back, it would be better. I know he is still pretty strong, I continue to work with him on leg and arm exercises. I told the coordinator that he has a will to live. Anyone who has been through what Tom has been through has a will to live. If they need him to get up, he will find a way to get up. He won't be able to walk a mile but he will get on his feet. It would sure help if the nurses would quit tearing his skin though. I noticed a few new tears near the old ones that were already being treated. I could put my fist through a wall it makes me so angry. I know they can be more gentle. Most, if not all, of these were preventable.
Our coordinator is on-call this weekend and I will continue to send results. Of course it will be much, much better if Tom is already at UAB. I'll keep praying that a bed will open up so he can move today or tomorrow. The weekend will make it much more difficult.
This morning he was still trying to figure out a plan to get out of the room. He did, however, answer some different questions correctly for the nurse. All of the usual, day, date, year, President questions,plus several others he got right so that is encouraging.
I missed Dr. Dunn, who is always early, but was able to catch Dr. Rutland. Tom will get more blood today (if you're counting how much he's received lately, let me know). I think this will make about 12 units. His Potassium is 3.3 - still low, but Dr. Rutland and I agreed it was good - considering . . .
They are concerned about his nutrition. Tom is not eating very much (except grapes and melon) and he needs more protein. He didn't want his eggs this morning but he had two servings of milk. They may give him IV nutrition - the nutritionist will see him today. I helped get his wound dressings changed while I was there. His skin is so thin, several of the stitches he got yesterday have already ripped out. This new tear is in a really bad place on his lower abdomen. Dr. Rosen's nurse, Meredith, came in shortly after to check on the stitches and cleaned and changed the dressing again. Tom adores Dr. Rosen and Meredith so it always calms him when they see him. I had given Meredith a heads up that Tom wants to get up and get out of the room so she told him he needed to stay in bed for another day. Tom seemed to accept that OK.
Dr. Rutland called UAB and they are still on diversion. He left a message for the Liver Center and they called back right before I left. Dr. Pearman (resident intensivist) put the call through to Dr. Rutland's office. I don't know if anything will transpire from that conversation. We're all hoping that with the holidays, they will discharge some patients. He still needs to transfer to their ICU if he's in the ICU here. I like him ICU but I feel certain they will move him out as soon as they can.
I just talked to our Transplant Coordinator at UAB. I sent new blood tests today and his MELD is 27. These tests are good and can be submitted up to tomorrow night at midnight. The "new thing" is for the doctors to see the patient to make sure they are transplantable before submitting a score that will place him this high on the list. Because Tom has been at the bottom and is now suddenly at the top, they want to make sure he is not "too sick". I am very worried that since he has not been on his feet in a while that they will not want to transplant him. Everyone asks the question: is everyone that gets a transplant able to walk around, especially if you have to be so sick before getting a liver?? Well, most folks probably haven't had all of the challenges Tom has had with the leg wounds and such. If Tom had been on his feet more prior to this last set back, it would be better. I know he is still pretty strong, I continue to work with him on leg and arm exercises. I told the coordinator that he has a will to live. Anyone who has been through what Tom has been through has a will to live. If they need him to get up, he will find a way to get up. He won't be able to walk a mile but he will get on his feet. It would sure help if the nurses would quit tearing his skin though. I noticed a few new tears near the old ones that were already being treated. I could put my fist through a wall it makes me so angry. I know they can be more gentle. Most, if not all, of these were preventable.
Our coordinator is on-call this weekend and I will continue to send results. Of course it will be much, much better if Tom is already at UAB. I'll keep praying that a bed will open up so he can move today or tomorrow. The weekend will make it much more difficult.
Wednesday, December 19, 2012
The good and the ugly
Tm is a little less confused but still trying to figure out how to get out of the hospital. I fear he knows a lot more than we think he does - and it's scary. I don't know that I can explain it to you.
The ugly: Tom has another skin tear! This one is on his abdomen and it is big. This one Dr. Rosen came and stitched up just a little while ago. It was painful to watch. Tom's abdomen is so swollen. They came to do the paracentesis and, just like a year ago at UAB, all of the fluid is in the tissue and there is nothing to pull out. That is very disappointing but not surprising to me.
I did not hear from UAB. I want to accept that there is a good reason but I just can't. I am scared, angry, frustrated . . . It is so hard to stay positive when nothing seems to go even a little bit right.
I don't know what the infectious disease doc will do not that they can't get any fluid. Maybe tomorrow will bring better news.
The ugly: Tom has another skin tear! This one is on his abdomen and it is big. This one Dr. Rosen came and stitched up just a little while ago. It was painful to watch. Tom's abdomen is so swollen. They came to do the paracentesis and, just like a year ago at UAB, all of the fluid is in the tissue and there is nothing to pull out. That is very disappointing but not surprising to me.
I did not hear from UAB. I want to accept that there is a good reason but I just can't. I am scared, angry, frustrated . . . It is so hard to stay positive when nothing seems to go even a little bit right.
I don't know what the infectious disease doc will do not that they can't get any fluid. Maybe tomorrow will bring better news.
NO CHANGE
I talked to Tom's nurse and she said he is slightly more alert today but mostly the same (does that make any sense?).
He is receiving some fresh, frozen plazma this morning and then will have the paracentesis. They will do that right in his room. I hope they pull off as much fluid as they can versus just enough to test with. It will make Tom more comfortable.
I've left a message with the UAB Liver Center this morning - they are going to get tired of me calling them. I want to know if they will go ahead and submit Tom's blood test results even if the docs can't see him ahead of time. Maybe they can consult with the docs here to get a feel for how Tom is really doing. Although, his nurse told me that his "numbers" aren't as good today. His BP is low and his heart rate is still high but if he needs the plazma, that would affect those, I think.
She did say his INR is high - that's one of the MELD score numbers so that might help. His creatinine is down to 1.6 - which is better from a kidney function standpoint but not for a MELD standpoint. I feel like the liver is getting worse (if that's even possible) and he will continue to decline until he can get a transplant. I just pray the docs will keep everything else steady so he is strong enough for the surgery. We knew he would need to get "sicker" but it would be really bad if, all of the sudden, he is too sick.
I still believe he hasn't suffered this much and survived this long for nothing. There has been too much sadness lately, I have great hope for great things ahead for Tom.
Let us not forget our greatest hope is in Christ Jesus!
He is receiving some fresh, frozen plazma this morning and then will have the paracentesis. They will do that right in his room. I hope they pull off as much fluid as they can versus just enough to test with. It will make Tom more comfortable.
I've left a message with the UAB Liver Center this morning - they are going to get tired of me calling them. I want to know if they will go ahead and submit Tom's blood test results even if the docs can't see him ahead of time. Maybe they can consult with the docs here to get a feel for how Tom is really doing. Although, his nurse told me that his "numbers" aren't as good today. His BP is low and his heart rate is still high but if he needs the plazma, that would affect those, I think.
She did say his INR is high - that's one of the MELD score numbers so that might help. His creatinine is down to 1.6 - which is better from a kidney function standpoint but not for a MELD standpoint. I feel like the liver is getting worse (if that's even possible) and he will continue to decline until he can get a transplant. I just pray the docs will keep everything else steady so he is strong enough for the surgery. We knew he would need to get "sicker" but it would be really bad if, all of the sudden, he is too sick.
I still believe he hasn't suffered this much and survived this long for nothing. There has been too much sadness lately, I have great hope for great things ahead for Tom.
Let us not forget our greatest hope is in Christ Jesus!
Tuesday, December 18, 2012
No beds at UAB
There are no beds at UAB so for now, Tom will stay in Baptist - Nashville. They seem to want to keep him in ICU as well. The infectious disease doc came by and wants to do a paracentesis tomorrow. He doesn't think it is anything big but, for Tom, the littlest thing can be big. They detected a bacterial infection in one of four blood samples so they are giving Tom an antibiotic and will see how things go tomorrow. I've been worried all along about an infection in his abdomen.
Tom is slightly less confused, they say. I'm not so sure. He just keeps saying he is scared. We've found a few creative ways to give him his medicine.
I came home to a beautiful Christmas bouquet of flowers tonight. Compliments of our neighbors. It actually looks like Christmas inside our house! I may even get to wrap some gifts tonight although I'm not sure the dogs will leave me along long enough!
Praying I can provide better news tomorrow.
Tom is slightly less confused, they say. I'm not so sure. He just keeps saying he is scared. We've found a few creative ways to give him his medicine.
I came home to a beautiful Christmas bouquet of flowers tonight. Compliments of our neighbors. It actually looks like Christmas inside our house! I may even get to wrap some gifts tonight although I'm not sure the dogs will leave me along long enough!
Praying I can provide better news tomorrow.
GOING NOWHERE FAST
Dr. Neidermeyer says Tom is doing better, I don't see it. He is still very confused and agitated. Dr. Rutland came by at lunch and tried calling UAB. They are on "diversion" (i.e. no beds) so he's putting in a call to the Liver Center to see if they can help. Apparently sometimes they can make room. It is so frustrating! I hope there is not a problem with insurance approval - I'm sure no one is thinking about this except me.
Tom's numbers are either the same or better. His electrolytes are still out of whack and they continue to give him potassium. It is heartbreaking to see him or leave him when he's yelling at me to please stay! Dr. Neidermeyer tried to talk to him and he seems to understand and then is confused all over again. I was able to get Tom to take his medicine at lunch by hiding it in his food. If you try to give it to him directly, he won't take it.
If I get any more info, I'll post again.
Tom's numbers are either the same or better. His electrolytes are still out of whack and they continue to give him potassium. It is heartbreaking to see him or leave him when he's yelling at me to please stay! Dr. Neidermeyer tried to talk to him and he seems to understand and then is confused all over again. I was able to get Tom to take his medicine at lunch by hiding it in his food. If you try to give it to him directly, he won't take it.
If I get any more info, I'll post again.
STRUGGLING
Tom is struggling this morning. I just got off the phone with his nurse and he is still very confused. He refused to take his medicine last night, even after his nurse called and asked me to talk to him. This morning his nurse was able to get him to take the ammonia medicine with ice cream. He's tried pulling out his PIC line. I will wait until lunch time to go to the hospital in hopes of catching Dr. Rutland and so that I can help give Tom his noon meds.
His potassium level is up slightly but still pretty low. They did not do an ammonia test today - it doesn't really matter. I don't know why he is losing potassium - I don't think the docs know either. I hope this doesn't cause any problems if they get a transfer approved. I'm thinking that will be an all day thing. Just because UAB is willing to accept the transfer, doesn't mean insurance will approve it.
It is so hard to know he is confused. His thinking was so much clearer late last week. He keeps saying he is scared but I'm not sure he really knows what he is saying. You really can't reason with him about it. I tried and tried last night. He kept sliding his legs off the bed but I could get him to move them back part of the time - that was encouraging to me that he had strength to do that. I finally wedged some pillows at the end of the bed so he couldn't hang his feet of the side - I was afraid he was going to tear his skin.
I keep repeating: God is in control; Tom is in God's Hands!
His potassium level is up slightly but still pretty low. They did not do an ammonia test today - it doesn't really matter. I don't know why he is losing potassium - I don't think the docs know either. I hope this doesn't cause any problems if they get a transfer approved. I'm thinking that will be an all day thing. Just because UAB is willing to accept the transfer, doesn't mean insurance will approve it.
It is so hard to know he is confused. His thinking was so much clearer late last week. He keeps saying he is scared but I'm not sure he really knows what he is saying. You really can't reason with him about it. I tried and tried last night. He kept sliding his legs off the bed but I could get him to move them back part of the time - that was encouraging to me that he had strength to do that. I finally wedged some pillows at the end of the bed so he couldn't hang his feet of the side - I was afraid he was going to tear his skin.
I keep repeating: God is in control; Tom is in God's Hands!
Monday, December 17, 2012
Red Tape
Ok, lots of news so I'll try to bullet-point it:
- UAB is ok with transfer, except that Tom is in ICU so it has to be a unit to unit transfer and UAB has no unit beds. There was a lot of back and forth with who OK's the transfer so nothing will happen tonight.
- I think that if Dr. Rutland talks to the Liver Center again, they will find a place for Tom but that won't happen until tomorrow (why wait?? I don't know!!!!)
- If UAB finds that Tom is strong enough for a transplant, they will go ahead and submit his new MELD score which is a 26! This puts him at #2 in his blood group. He would hold that position for a week!
- Tom's ammonia level is fine. They are having a lot of trouble with his potassium level. That is probably why he is so confused and somewhat belligerent. He refuses to take his medicine, he keeps moving his legs off the bed - I'm afraid he will hurt himself, and he really isn't comprehending what is going on so it's a struggle.
So, please pray, pray, pray. I am hopeful Tom will go to UAB tomorrow and God's Will will be for Tom to get a liver.
- UAB is ok with transfer, except that Tom is in ICU so it has to be a unit to unit transfer and UAB has no unit beds. There was a lot of back and forth with who OK's the transfer so nothing will happen tonight.
- I think that if Dr. Rutland talks to the Liver Center again, they will find a place for Tom but that won't happen until tomorrow (why wait?? I don't know!!!!)
- If UAB finds that Tom is strong enough for a transplant, they will go ahead and submit his new MELD score which is a 26! This puts him at #2 in his blood group. He would hold that position for a week!
- Tom's ammonia level is fine. They are having a lot of trouble with his potassium level. That is probably why he is so confused and somewhat belligerent. He refuses to take his medicine, he keeps moving his legs off the bed - I'm afraid he will hurt himself, and he really isn't comprehending what is going on so it's a struggle.
So, please pray, pray, pray. I am hopeful Tom will go to UAB tomorrow and God's Will will be for Tom to get a liver.
Confused again
Tom is somewhat confused again today. He has moments of clarity but is very sleepy too. My diagnosis: ammonia level. They did not test his ammonia level this morning but have called to have it done. Dr. Neidermeyer, the intensivist, just came by and agrees that Tom's ammonia may be elevated. It sounds like everything else is about the same. His creatinine is down a little so I'm glad I have the blood tests when it was higher that were sent to UAB. They are watching his kidney function closely. Dr. Dunn is back on the case so we're happy about that.
With my schedule today, I'll probably not see Rutland. I am anxious to know if Dr. Miller hears from UAB. It seems like he makes his rounds at the end of the day so maybe I'll see him tonight.
I don't know the rest of the blood test results, maybe things will be more calm later today and I can get them. His nurse did say Tom's electrolytes are "out of whack" but they've been that way. Today he is getting magnesium. I helped move Tom around in his bed a little and he didn't complain about pain at all.
I'll post again this evening.
With my schedule today, I'll probably not see Rutland. I am anxious to know if Dr. Miller hears from UAB. It seems like he makes his rounds at the end of the day so maybe I'll see him tonight.
I don't know the rest of the blood test results, maybe things will be more calm later today and I can get them. His nurse did say Tom's electrolytes are "out of whack" but they've been that way. Today he is getting magnesium. I helped move Tom around in his bed a little and he didn't complain about pain at all.
I'll post again this evening.
Sunday, December 16, 2012
More blood
Tom is getting more blood this morning. I must say, I am concerned. Drs Rutland and Hyman have been in to see Tom but didn't say much. Dr. Rutland is going to have Dr. Price (gastro) see Tom today. Apparently he was supposed to see him yesterday but I guess there was some confusion in the request. Dr. Rutland mentioned they might want to do another endoscopy to see if they can find a source of bleeding. All this blood must be going somewhere. I think Dr. Rutland is anxious to get Tom transferred to UAB. He keeps deferring to Dr. Miller making the call, I just want to say "call them yourself".
Tom's potassium is pretty low so they have been giving him potassium via IV. Tom was very keyed up overnight. He called me 4 times, always complaining about being thirsty. I talked to his nurse about 4 am and she said he had been drinking a lot of water, milk and juice. She felt like they needed to restrict it some since he has so much fluid leaking out, which is true. But it's not good for him to be dehydrated either. The docs didn't say anything about fluid restriction. He is still very thirsty. He continues to complain about pain, although not as much. He is cold, I'm sure the cold blood doesn't help. The rest of us are hot because the thermostat is so high in his room. He was by anxious when I got here this morning but is calm now. I still don't know what that was all about, maybe it's all of his electrolytes out of whack or something.
He will stay in ICU another day. His heart rate is good, his BP is a little low but the blood should help that. He keeps saying he wants to be left alone so he can rest but I can't get him to take a nap. He is scared, I hate that. I keep trying to reassure him (and myself).
Tom's potassium is pretty low so they have been giving him potassium via IV. Tom was very keyed up overnight. He called me 4 times, always complaining about being thirsty. I talked to his nurse about 4 am and she said he had been drinking a lot of water, milk and juice. She felt like they needed to restrict it some since he has so much fluid leaking out, which is true. But it's not good for him to be dehydrated either. The docs didn't say anything about fluid restriction. He is still very thirsty. He continues to complain about pain, although not as much. He is cold, I'm sure the cold blood doesn't help. The rest of us are hot because the thermostat is so high in his room. He was by anxious when I got here this morning but is calm now. I still don't know what that was all about, maybe it's all of his electrolytes out of whack or something.
He will stay in ICU another day. His heart rate is good, his BP is a little low but the blood should help that. He keeps saying he wants to be left alone so he can rest but I can't get him to take a nap. He is scared, I hate that. I keep trying to reassure him (and myself).
Saturday, December 15, 2012
Afternoon report
Dr. Rutland is on call this weekend so he came by earlier to check on Tom. He didn't think Dr. Miller had heard back from UAB about a transfer. He did say that Dr. Miller's notes indicate Tom is now 13th on the transplant list! I am surprised he's moved up that much. It's so hard to pray for a liver sometimes so I've changed my tactic and am now praying that the 12 people ahead of Tom improve and move below him on the list.
Tom will probably move to a regular room tomorrow. I've got this crew already trained now! I wish they could go with Tom. His nurse, Julia, is a neat-freak. I love her!!!
Tom has been so hungry. Dr. Rutland said he could eat anything he wanted, however he still has a restricted diet here so I brought in a sandwich from Jason's Deli. He ate a hamburger for lunch too. There is a sign on the ICU door that clearly states "no food or drink allowed" yet every time I walk through the doors I have something to eat and/or drink!
My friends from Chicago, Dawna and Sean, sent us some Garrett's popcorn. It is the best! I brought some this morning and Tom decided he wanted it. I brought more this afternoon so I will leave it with him. I'm sure the night crew will love picking it up and finding it all in his bed.
Tom will probably move to a regular room tomorrow. I've got this crew already trained now! I wish they could go with Tom. His nurse, Julia, is a neat-freak. I love her!!!
Tom has been so hungry. Dr. Rutland said he could eat anything he wanted, however he still has a restricted diet here so I brought in a sandwich from Jason's Deli. He ate a hamburger for lunch too. There is a sign on the ICU door that clearly states "no food or drink allowed" yet every time I walk through the doors I have something to eat and/or drink!
My friends from Chicago, Dawna and Sean, sent us some Garrett's popcorn. It is the best! I brought some this morning and Tom decided he wanted it. I brought more this afternoon so I will leave it with him. I'm sure the night crew will love picking it up and finding it all in his bed.
3/4 of a tank
Tom has now received 4 units of blood! We are waiting for new labs to see if his hematocrit is above 25 now. He will stay in ICU today. His heart rate is good, BP is still a little low but ok. They are still giving him some fluid to help push that up. Tom is so full of fluid, it's just not in his veins where it needs to be. That is what is causing the pain. It is literally like blowing up a balloon as much as you can. All of those nerves are pressing against his skin. He has gained 32 lbs since arriving here on Tuesday night! He is miserable.
He hates ICU, so he's not happy about having to stay today. He gets a lot of attention, there are always supplies in his room and I don't have to ask for anything except milk for Tom. I like seeing and hearing the activity. He has a good team today. His nurse told me I looked familiar when I walked in this morning. I get that a lot! I think I am here more than the staff. Even the residents who have helped us stop by and say hello!
Tom has been very thirsty. I bought him some hot tea, Mello Yello and a bigger bottle of milk when I got here this morning. Two of the three are gone!
They gave him something for pain just now - or said they did. Hopefully it will go to work soon. I brought my notebook with me today so I hope to get a little work done while I'm here. I need to do some ironing and gift wrapping but I don't think they would like me to haul all of that into this "cube".
As bad as Tom feels, I can't even begin to tell you how much better it is that he is alert and thinking clearly! He misses the puppies a lot.
He hates ICU, so he's not happy about having to stay today. He gets a lot of attention, there are always supplies in his room and I don't have to ask for anything except milk for Tom. I like seeing and hearing the activity. He has a good team today. His nurse told me I looked familiar when I walked in this morning. I get that a lot! I think I am here more than the staff. Even the residents who have helped us stop by and say hello!
Tom has been very thirsty. I bought him some hot tea, Mello Yello and a bigger bottle of milk when I got here this morning. Two of the three are gone!
They gave him something for pain just now - or said they did. Hopefully it will go to work soon. I brought my notebook with me today so I hope to get a little work done while I'm here. I need to do some ironing and gift wrapping but I don't think they would like me to haul all of that into this "cube".
As bad as Tom feels, I can't even begin to tell you how much better it is that he is alert and thinking clearly! He misses the puppies a lot.
Friday, December 14, 2012
"1/3 of a tank"
Dr. Rutland came in to see Tom while I was there at lunch. Tom's hematocrit is 16! Dr. Rutland is usually giving Tom blood when it's at 25. It was 23 on Wednesday when he received 2 units of blood. He is probably receiving the first unit right now. This would probably explain the low BP and high heart rate. Unfortunately, they don't know where the blood is going (coming from) just yet.
Tom is still in a lot of pain and still feels burning in his chest. I tried to get him to eat a hamburger at lunch, he had a few bites and drank a lot of milk. He wanted a donut, I told him no!
He's very scared.
I asked Dr. Rutland if Dr. Miller had talked to UAB. He wasn't sure. He said Dr. Miller left a message but wasn't sure if they actually talked. I feel like UAB would call back pretty quickly since it's physician to physician. I hope to hear something more about that later.
I have a copy of Tom's blood work from this week. Not every set is complete for UAB. Today's results look like they might be the best set but they were not complete either so I asked the nurse to call Dr. Rutland and have him request the missing pieces. The resident in ICU placed the orders and changed tomorrows orders so that a full set will be run then too.
Tom's WBC has been as high as 20 and is now at 14. His ammonia level is normal. Some of his electrolytes are low too. I think he will stay tonight in ICU.
Tom is still in a lot of pain and still feels burning in his chest. I tried to get him to eat a hamburger at lunch, he had a few bites and drank a lot of milk. He wanted a donut, I told him no!
He's very scared.
I asked Dr. Rutland if Dr. Miller had talked to UAB. He wasn't sure. He said Dr. Miller left a message but wasn't sure if they actually talked. I feel like UAB would call back pretty quickly since it's physician to physician. I hope to hear something more about that later.
I have a copy of Tom's blood work from this week. Not every set is complete for UAB. Today's results look like they might be the best set but they were not complete either so I asked the nurse to call Dr. Rutland and have him request the missing pieces. The resident in ICU placed the orders and changed tomorrows orders so that a full set will be run then too.
Tom's WBC has been as high as 20 and is now at 14. His ammonia level is normal. Some of his electrolytes are low too. I think he will stay tonight in ICU.
Four hours later . . .
Tom got out of ICU last night but was back in 4 hours later. His heart rate jumped up and they couldn't get it back down. He complained constantly about a burning in his chest before he ever left ICU. He said he didn't know if he was having a heart attack but it felt like one. Everyone thought it was heartburn. They had him on the telemetry so I assured him before I left that if anything went wrong with his heart they would know it right away.
I talked to his nurse this morning. They have given him some medicine to help get his heart rate down but it is still around 130. They could give him another medicine but that drops his BP and it's kinda low as it is. Tom is still in extreme pain - probably because of all the excess fluid. They are giving him lots and lots of albumin to pull the fluid back into his blood vessels. They can't give him anything for pain because that drops his BP too.
Please pray for Tom to get some relief.
I talked to his nurse this morning. They have given him some medicine to help get his heart rate down but it is still around 130. They could give him another medicine but that drops his BP and it's kinda low as it is. Tom is still in extreme pain - probably because of all the excess fluid. They are giving him lots and lots of albumin to pull the fluid back into his blood vessels. They can't give him anything for pain because that drops his BP too.
Please pray for Tom to get some relief.
Thursday, December 13, 2012
Catch up
OK, so a lot has happened since my last post . . . I'll try to be brief (Ha!)
Tom was moved to ICU (later) Wednesday morning because his BP was low and wasn't improving with the IV fluids. I went by the hospital at lunch to see Tom and get an update. I was able to meet with Dr. Rutland and Dr. Hyman (Critical Care doc). They talked about putting in an NG tube because Tom was not alert enough to take his medicine. I asked them to let me try first. The NG tube experience when Tom first got sick was a disaster and I didn't want him to go through that again. I was able to get Tom to take his medicine :-). They put in a PIC line and gave Tom some blood. He was doing so much better yesterday evening. He was responding better, ate some grapes and some dinner. I gave him his medicine (they just stick it on the counter and wait for me to get there). He was focused when he opened his eyes and told me I needed to call his Dad. Tom was able to talk to him for a while. He did not want me to leave but no visitors are allowed between 6 and 8 pm. I was happy to go home after having only 2 hours of sleep Tuesday night.
This morning, Tom actually called me! He hasn't done that by himself in about 2 weeks! I almost cried. I could tell he was more alert. He told me he needed help and was hungry and thirsty. I called the nurses station and they told me not to worry, they would get him some food. I will go and see him shortly and hopefully catch the doctors again.
Dr. Rutland had asked wound care to look at Tom's leg wounds (which they did) and since Dr. Miller was off yesterday, Dr. Price was going to check on Tom for a gastroenterology consult. He has a lot of fluid in his abdomen which is probably where the infection resides. Dr. Rutland also mentioned a possible transfer to UAB. I'm making no plans but will see how things shake out today. Logistically that would be a mess but we will work it out. If Tom is more clear headed, it will be much easier.
So, that is where things are.
Tom was moved to ICU (later) Wednesday morning because his BP was low and wasn't improving with the IV fluids. I went by the hospital at lunch to see Tom and get an update. I was able to meet with Dr. Rutland and Dr. Hyman (Critical Care doc). They talked about putting in an NG tube because Tom was not alert enough to take his medicine. I asked them to let me try first. The NG tube experience when Tom first got sick was a disaster and I didn't want him to go through that again. I was able to get Tom to take his medicine :-). They put in a PIC line and gave Tom some blood. He was doing so much better yesterday evening. He was responding better, ate some grapes and some dinner. I gave him his medicine (they just stick it on the counter and wait for me to get there). He was focused when he opened his eyes and told me I needed to call his Dad. Tom was able to talk to him for a while. He did not want me to leave but no visitors are allowed between 6 and 8 pm. I was happy to go home after having only 2 hours of sleep Tuesday night.
This morning, Tom actually called me! He hasn't done that by himself in about 2 weeks! I almost cried. I could tell he was more alert. He told me he needed help and was hungry and thirsty. I called the nurses station and they told me not to worry, they would get him some food. I will go and see him shortly and hopefully catch the doctors again.
Dr. Rutland had asked wound care to look at Tom's leg wounds (which they did) and since Dr. Miller was off yesterday, Dr. Price was going to check on Tom for a gastroenterology consult. He has a lot of fluid in his abdomen which is probably where the infection resides. Dr. Rutland also mentioned a possible transfer to UAB. I'm making no plans but will see how things shake out today. Logistically that would be a mess but we will work it out. If Tom is more clear headed, it will be much easier.
So, that is where things are.
Wednesday, December 12, 2012
What we know . . .
Ammonia 132 (not nearly as bad as I thought it would be but still pretty high)
WBC 15.6 ( infection somewhere?)
Creatinine 1.5 (this may help him on the list but I'm not sure. The other stuff that matters is not that bad)
Hemoglobin is critically low
Hematocrit is 23
Head CT scan is clear - obviously this is good news.
Abdomen CT scan shows nothing that we didn't already know about.
Still working on urine test.
He will be getting some blood. I'm pretty sure about that. Nothing else is that far out of whack. This just blows my mind. He is also a bit dehydrated so the IV fluid will help too.
Hopefully by this time tomorrow (which will actually be Thursday) he will be a lot better.
He has a clean room assignment so he will be moving shortly.
WBC 15.6 ( infection somewhere?)
Creatinine 1.5 (this may help him on the list but I'm not sure. The other stuff that matters is not that bad)
Hemoglobin is critically low
Hematocrit is 23
Head CT scan is clear - obviously this is good news.
Abdomen CT scan shows nothing that we didn't already know about.
Still working on urine test.
He will be getting some blood. I'm pretty sure about that. Nothing else is that far out of whack. This just blows my mind. He is also a bit dehydrated so the IV fluid will help too.
Hopefully by this time tomorrow (which will actually be Thursday) he will be a lot better.
He has a clean room assignment so he will be moving shortly.
Tuesday, December 11, 2012
Back at Baptist
We are back in the Baptist ER. After a phone conversation with the NHC doc tonight, he felt like it would be best for Tom to get checked out. I called NHC this afternoon because I was getting concerned that there was excessive fluid in Tom's abdomen, his encephalopathy (confusion) was getting worse and all he did was moan in pain. His nurse told me she would discuss the situation with the nurse practitioner. When I got to NHC tonight, I reiterated my concerns to the night nurse. Even his day tech said his abdomen was much worse and she had said something to the nurse. Tom did not eat but 3 bites of dinner (all cold). I just couldn't help worrying. His night nurse called Dr. McGinley. I'm not sure what was said but when he asked to speak to me, he told me he thought Tom should go to Baptist - I did try for UAB.
So, here we are. They have drawn blood and started IV fluids. They feel like Tom is a little dehydrated. He is, at this moment, getting a CAT scan on his abdomen and his head. All Tom says is "ow" over and over. He's not really interested in answering any questions. He did know my name and says he knows where he is but I'm not so sure.
I spent about 15 minutes with Tom's NHC roommate after Tom left. He was all out of sorts about what was going on. Because of HIPPA, they couldn't tell him anything but he wouldn't quit. He was pretty upset. The nurse finally asked me if he could tell the roommate what was going on. I told him I would talk to him. It was actually kind of funny but also sad. He wanted to know know what was going on, why they wouldn't tell him anything, and why they didn't do this "in the daylight"! I told him I wondered the same thing! Apparently he gets pretty worried about his roommates. He wanted to know who was with Tom and if I was going to the hospital in a separate car. I finally told him he needed to get some rest since he is supposed to be leaving rehab soon to try to get him to stop asking questions.
I went home to feed the dogs and to do some server work and then headed to the hospital. They seem kind of busy tonight. I had hoped they would be further along with Tom by the time I got here. I know he will be staying but I don't want to leave until I know the blood test results. I have some stuff to do first thing in the morning so I cannot sleep in. It's closing in on 1 am so there won't be much more than a nap tonight.
Tom is now back and he's sleeping. I doubt it will be for long though. I'd like to see him get settled in his room, but I don't know what the availability is like - they've closed a few floors here recently. I'll post again later this morning.
So, here we are. They have drawn blood and started IV fluids. They feel like Tom is a little dehydrated. He is, at this moment, getting a CAT scan on his abdomen and his head. All Tom says is "ow" over and over. He's not really interested in answering any questions. He did know my name and says he knows where he is but I'm not so sure.
I spent about 15 minutes with Tom's NHC roommate after Tom left. He was all out of sorts about what was going on. Because of HIPPA, they couldn't tell him anything but he wouldn't quit. He was pretty upset. The nurse finally asked me if he could tell the roommate what was going on. I told him I would talk to him. It was actually kind of funny but also sad. He wanted to know know what was going on, why they wouldn't tell him anything, and why they didn't do this "in the daylight"! I told him I wondered the same thing! Apparently he gets pretty worried about his roommates. He wanted to know who was with Tom and if I was going to the hospital in a separate car. I finally told him he needed to get some rest since he is supposed to be leaving rehab soon to try to get him to stop asking questions.
I went home to feed the dogs and to do some server work and then headed to the hospital. They seem kind of busy tonight. I had hoped they would be further along with Tom by the time I got here. I know he will be staying but I don't want to leave until I know the blood test results. I have some stuff to do first thing in the morning so I cannot sleep in. It's closing in on 1 am so there won't be much more than a nap tonight.
Tom is now back and he's sleeping. I doubt it will be for long though. I'd like to see him get settled in his room, but I don't know what the availability is like - they've closed a few floors here recently. I'll post again later this morning.
Monday, December 10, 2012
Thank you Debbie!
It was so good to have Debbie here this weekend. She spent Friday afternoon, all day Saturday and Sunday and a couple of hours this morning with Tom. He told me this evening that it was a "real shame" she had to go home. I was able to get a good bit of my Christmas shopping done. I really don't think Tom missed me at all! I was also able to run in the Rudolph's Red Nose 5k in Nashville on Friday night and attend an open house for the Andrew Ministers at church. I brought the pups to visit Sunday afternoon which Tom really enjoyed.
Tom has received two new beds, the first one didn't work. This one is firm which will help his back. He has not complained about back pain at all. He does continue to say he "just doesn't feel good". When I asked him to point to where it hurt, he touched his nose. I don't know what to think about that. The struggles with confusion/memory continue. I guess they will do blood tests again on Wednesday, I'm anxious to see what they show. Tom said he had physical therapy today, the tech said he had occupational therapy. I asked him if we could do some of the exercises together, he moved his arms up and down. He's still pretty tired and sleeps a lot which I think goes with an elevated ammonia level.
His roommate is an older gentleman who is a bit hard of hearing. Tom has handled it really well. I drives me crazy - his TV is really loud!
I received a beautiful bouquet of flowers from our neighbors, Karen and Steve, this weekend. We continue to be blessed and lifted up by great friends. Several of our friends have had surgery recently. One of them is recovering here so I can drop by to see her also.
Please keep praying we can get to the bottom of the ammonia level thing. I'm really worried about it.
Tom has received two new beds, the first one didn't work. This one is firm which will help his back. He has not complained about back pain at all. He does continue to say he "just doesn't feel good". When I asked him to point to where it hurt, he touched his nose. I don't know what to think about that. The struggles with confusion/memory continue. I guess they will do blood tests again on Wednesday, I'm anxious to see what they show. Tom said he had physical therapy today, the tech said he had occupational therapy. I asked him if we could do some of the exercises together, he moved his arms up and down. He's still pretty tired and sleeps a lot which I think goes with an elevated ammonia level.
His roommate is an older gentleman who is a bit hard of hearing. Tom has handled it really well. I drives me crazy - his TV is really loud!
I received a beautiful bouquet of flowers from our neighbors, Karen and Steve, this weekend. We continue to be blessed and lifted up by great friends. Several of our friends have had surgery recently. One of them is recovering here so I can drop by to see her also.
Please keep praying we can get to the bottom of the ammonia level thing. I'm really worried about it.
Friday, December 7, 2012
Debbie is here!!
So very happy that Tom's sister, Debbie, has arrived. I know Tom will be excited to see her - he's been asking about her every day!
Tom has been struggling with the ammonia level since moving to rehab. It was in the 90's on Wednesday and probably not much better yesterday. They don't test it every day - it's not really necessary. He could communicate pretty well but was really lethargic a good bit of the time. He is still complaining about "not feeling well" but I can't get anything more specific from him. It's really a struggle. He's not eating as much as I'd like him to either - probably because he doesn't feel well. Debbie is going to take his recent blood work from the hospital so they can use it as a baseline for how Tom is doing.
I've talked to 3-4 people about his case - nurses, physical therapists, Dr. Richards and the case worker at NHC. I contacted Dr. Richards' office yesterday because I wanted to know about his conversation with UAB. Basically they told him they wanted to see Tom - thus the call from UAB on Tuesday to schedule the appointment Tom now has on the 19th. Dr. Richards and I both agreed that if Tom needed to be hospitalized from rehab, we would work to see about getting him to UAB instead of Baptist. I don't really know how to go about pulling that off. I've left a message for the Blue Cross case manager - I'm guessing they would have to approve the transport. I'm sure they will want him to go to Baptist first - seems like a lot of extra effort to me but they won't want to take any chances. I have Dr. Richards' cell phone number now and he told me to call him at any time!
They put him on an air mattress bed today - similar to the beds in the hospital. It is supposed to help with the leg wounds and hopefully prevent others until he is getting up and down more regularly. The physical therapists called yesterday. Tom sat up on the side of the bed but only for a short while. That's another problem with the ammonia, he is not responsive enough to "work out" or stand up/balance/walk so that will be a problem for the therapists. She wanted to schedule therapy every other day, but I suggested every day - I'm so mean!
I know Tom has been approved for 7 days of rehab. Apparently that is normal to approve 7 days at a time. He did get 21 days with the wound vac issue this summer! The problem is, there are only so many days allowed and we are getting very close to the max. I don't know if that is per calendar year or in a 12-month period so we could be in trouble if we run out. I don't know what will happen then. Every 7 days rehab will submit their reports and make recommendations. Seven days is surely not enough for Tom to get strong enough to go home - especially being hampered by the confusion. I still think something else is wrong - some kind of infection - his WBC was up a little from his last blood test at the hospital.
The wound care supervisor also called today and we discussed his leg wounds. It sounds like they have a good team of people taking care of him. I'm trying to let go and place Tom and his care in God's hands.
Tom has been struggling with the ammonia level since moving to rehab. It was in the 90's on Wednesday and probably not much better yesterday. They don't test it every day - it's not really necessary. He could communicate pretty well but was really lethargic a good bit of the time. He is still complaining about "not feeling well" but I can't get anything more specific from him. It's really a struggle. He's not eating as much as I'd like him to either - probably because he doesn't feel well. Debbie is going to take his recent blood work from the hospital so they can use it as a baseline for how Tom is doing.
I've talked to 3-4 people about his case - nurses, physical therapists, Dr. Richards and the case worker at NHC. I contacted Dr. Richards' office yesterday because I wanted to know about his conversation with UAB. Basically they told him they wanted to see Tom - thus the call from UAB on Tuesday to schedule the appointment Tom now has on the 19th. Dr. Richards and I both agreed that if Tom needed to be hospitalized from rehab, we would work to see about getting him to UAB instead of Baptist. I don't really know how to go about pulling that off. I've left a message for the Blue Cross case manager - I'm guessing they would have to approve the transport. I'm sure they will want him to go to Baptist first - seems like a lot of extra effort to me but they won't want to take any chances. I have Dr. Richards' cell phone number now and he told me to call him at any time!
They put him on an air mattress bed today - similar to the beds in the hospital. It is supposed to help with the leg wounds and hopefully prevent others until he is getting up and down more regularly. The physical therapists called yesterday. Tom sat up on the side of the bed but only for a short while. That's another problem with the ammonia, he is not responsive enough to "work out" or stand up/balance/walk so that will be a problem for the therapists. She wanted to schedule therapy every other day, but I suggested every day - I'm so mean!
I know Tom has been approved for 7 days of rehab. Apparently that is normal to approve 7 days at a time. He did get 21 days with the wound vac issue this summer! The problem is, there are only so many days allowed and we are getting very close to the max. I don't know if that is per calendar year or in a 12-month period so we could be in trouble if we run out. I don't know what will happen then. Every 7 days rehab will submit their reports and make recommendations. Seven days is surely not enough for Tom to get strong enough to go home - especially being hampered by the confusion. I still think something else is wrong - some kind of infection - his WBC was up a little from his last blood test at the hospital.
The wound care supervisor also called today and we discussed his leg wounds. It sounds like they have a good team of people taking care of him. I'm trying to let go and place Tom and his care in God's hands.
Wednesday, December 5, 2012
Settling in
I called NHC Place this morning and talked to Tom's day nurse for today. She said that other than some confusion, his night nurse and tech said he had a good night. I wonder if the same is true for his roommate?!? The confusion could be ammonia level, deep sleep or most likely - a combination of both. They drew blood this morning so I'm anxious to see what the results are. They will draw blood weekly while he is there. I'm not sure how many days have been approved - I'll try to find that out this afternoon.
Anyway, Tom seemed more relaxed when I was there last night. He ate the dinner they provided and I added to that a hamburger and chocolate milkshake from McDonalds because he was still so hungry. He had a small skin tear on his hand from the transport. The charge nurse last night said he was a "wound expert" so he was going to re-dress Tom's leg wounds.
Tom said he had physical therapy at the hospital and did a "whole lot" of exercises. I know it is going to be super painful for him to get up with these open wounds - they are on the back of both knees so . . . not a good area.
The first person I saw when I got to Tom's room last night was the day shift tech. She came to our house while working for Comfort Keepers. She was there for 4 hours and I couldn't get her out of there fast enough. I was not comfortable at all with her taking care of Tom. My feelings have not changed. I told the night charge nurse that we were "not a fan" of this particular employee so I hope she is not Tom's tech today. I hate to complain on day one but I want Tom's experience to be the best it can be so he will stay motivated.
I cannot begin to tell you how wonderful it was to drive 2 miles home last night instead of 20. I needed to get to the office extra early this morning so I did not go by before work. I didn't go by in the mornings when he was there last year because it puts me in bad traffic. It's too far to go during lunch too. I will try to keep that schedule in place and visit him after work.
Tom's sister, Debbie, is coming to visit this weekend. We are both so excited! Tom asks every day when she is coming. She is also going to cut his hair!! Finley and Fritzi will have guests as well since she is bringing her two Chihuahua's, Winkles and Lucy. F&F have instructions to clean up their toys before Friday - they are not complying!
Anyway, Tom seemed more relaxed when I was there last night. He ate the dinner they provided and I added to that a hamburger and chocolate milkshake from McDonalds because he was still so hungry. He had a small skin tear on his hand from the transport. The charge nurse last night said he was a "wound expert" so he was going to re-dress Tom's leg wounds.
Tom said he had physical therapy at the hospital and did a "whole lot" of exercises. I know it is going to be super painful for him to get up with these open wounds - they are on the back of both knees so . . . not a good area.
The first person I saw when I got to Tom's room last night was the day shift tech. She came to our house while working for Comfort Keepers. She was there for 4 hours and I couldn't get her out of there fast enough. I was not comfortable at all with her taking care of Tom. My feelings have not changed. I told the night charge nurse that we were "not a fan" of this particular employee so I hope she is not Tom's tech today. I hate to complain on day one but I want Tom's experience to be the best it can be so he will stay motivated.
I cannot begin to tell you how wonderful it was to drive 2 miles home last night instead of 20. I needed to get to the office extra early this morning so I did not go by before work. I didn't go by in the mornings when he was there last year because it puts me in bad traffic. It's too far to go during lunch too. I will try to keep that schedule in place and visit him after work.
Tom's sister, Debbie, is coming to visit this weekend. We are both so excited! Tom asks every day when she is coming. She is also going to cut his hair!! Finley and Fritzi will have guests as well since she is bringing her two Chihuahua's, Winkles and Lucy. F&F have instructions to clean up their toys before Friday - they are not complying!
Tuesday, December 4, 2012
On the move
Tom is moving today after all! The transport ambulance should be arriving to get him any minute. I was able to talk to him and let him know since I won't see him until after he gets to NHC. I have to work late so that will give him time to get settled before I get there tonight.
Praying the move is smooth and painless for Tom.
Praying the move is smooth and painless for Tom.
Waiting to move
I met with the folks at NHC Place in Cool Springs this morning to complete the paperwork for Tom's move to rehab. He has been at NHC Place before - it is 2 miles from home!
After yesterday's reports of ammonia level at 190 and WBC at 16, I didn't think Tom would be going anywhere. This morning his ammonia level was 67 and his WBC was 11. Dr. Richards came in and was preparing the paperwork for Tom's discharge to rehab. I think they are trying to get him out of the hospital while things still look good. All we are waiting on now is for Blue Cross to approve rehab. I haven't heard anything yet. I really hope this happens today - just for his piece of mind. Maybe the change of scenery will help motivate him. The pessimist in me fears he will be back in the hospital soon just because of the ups and downs of the past 3 weeks!
Tom was more alert this morning and so very ready to get out of the hospital - even if it is to rehab. His nurse told me he ate breakfast on his own. He called me about 8:15 and told me that Dr. Miller had been by and I needed to call him. Dr. Miller didn't really have anything new to report and re-stated that he didn't see anything of concern during the Endoscopy last week.
Dr. Richards confirmed that he was going to call Dr. Eckhoff. UAB called me a little while ago to schedule an appoinment for Tom to see Dr. Gray (one of the Transplant team physicians). Hopefully Tom will be strong enough for us to make it to Birmingham on Dec. 19th. I'm guessing that is a result of the phone call. I also sent today's labs to UAB. I doubt they will affect his MELD score. Dr. Richards has really slimmed down Tom's med list. I don't have a copy of it yet but I know he's removed a lot of the vitamin supplements. I don't know if that is good or bad. I wish they could do something to help the wound on Tom's right leg. I'm worried about it when he gets to rehab. I told the admissions rep about Tom's fragile skin this morning - she said she would pass it along and that I would have an opportunity to meet with the nurses and physical therapists.
I just called the hospital socal worker to see if they had heard from Blue Cross - nothing yet. I doubt he will go today because it is so late. Maybe tomorow.
After yesterday's reports of ammonia level at 190 and WBC at 16, I didn't think Tom would be going anywhere. This morning his ammonia level was 67 and his WBC was 11. Dr. Richards came in and was preparing the paperwork for Tom's discharge to rehab. I think they are trying to get him out of the hospital while things still look good. All we are waiting on now is for Blue Cross to approve rehab. I haven't heard anything yet. I really hope this happens today - just for his piece of mind. Maybe the change of scenery will help motivate him. The pessimist in me fears he will be back in the hospital soon just because of the ups and downs of the past 3 weeks!
Tom was more alert this morning and so very ready to get out of the hospital - even if it is to rehab. His nurse told me he ate breakfast on his own. He called me about 8:15 and told me that Dr. Miller had been by and I needed to call him. Dr. Miller didn't really have anything new to report and re-stated that he didn't see anything of concern during the Endoscopy last week.
Dr. Richards confirmed that he was going to call Dr. Eckhoff. UAB called me a little while ago to schedule an appoinment for Tom to see Dr. Gray (one of the Transplant team physicians). Hopefully Tom will be strong enough for us to make it to Birmingham on Dec. 19th. I'm guessing that is a result of the phone call. I also sent today's labs to UAB. I doubt they will affect his MELD score. Dr. Richards has really slimmed down Tom's med list. I don't have a copy of it yet but I know he's removed a lot of the vitamin supplements. I don't know if that is good or bad. I wish they could do something to help the wound on Tom's right leg. I'm worried about it when he gets to rehab. I told the admissions rep about Tom's fragile skin this morning - she said she would pass it along and that I would have an opportunity to meet with the nurses and physical therapists.
I just called the hospital socal worker to see if they had heard from Blue Cross - nothing yet. I doubt he will go today because it is so late. Maybe tomorow.
Monday, December 3, 2012
A DIFFICULT DAY
Today was just crazy! Tom was somewhat lethargic this morning but was making sense most of the time. I called around lunch and he was not himself at all. I talked to his nurse and she said he had been fine until I called. Anyway, when I got to the hospital about 1, he was even more lethargic. I talked to Dr. Richards who is taking care of Tom while Dr. Rutland is out this week and requested an ammonia test. It was 190!!! That explains a lot.
Tom is not much better this evening. I got him to eat some of his dinner. It's going to be a long night for the team tonight.
I called UAB just to get a reading on all that has been going on . . . is it normal for things to progress and the ammonia level to be such a problem? Apparently it is normal - not such good news. It still doesn't help his list placement. I did find out he is actually 17th on the list - which is pretty low (in my mind, I had him at 140th or something, so the 17th doesn't sound too bad but he could move up or down depending on the others on the list). Dr. Richards is going to make a call to Dr. Eckhoff at UAB tomorrow to discuss Tom's situation. Maybe Dr. Eckhoff can get some more exception points to help his chances.
I received a call this afternoon from NHC Cool Springs. They have a bed for Tom tomorrow! With the ammonia level, and the fact that his white blood cell count is up again too, I kind of doubt he will be going anywhere tomorrow. I'm going to go by NHC and complete the paperwork just so it will be ready when he can move - assuming a bed is still available.
Dr. Richards came in this evening too. He is changing some meds to see if he can help a few things. He had a specialist look at the wound on Tom's leg which is still huge and horrible. I can't believe they didn't stitch it up - it's that bad. Anyway, the pain is excrutiating for Tom, not to mention a path to infection. It doesn't look infected but it still could be contributing to some of his problems. They are really struggling to figure out what is causing the WBC and ammonia levels to escalate.
Tom is not much better this evening. I got him to eat some of his dinner. It's going to be a long night for the team tonight.
I called UAB just to get a reading on all that has been going on . . . is it normal for things to progress and the ammonia level to be such a problem? Apparently it is normal - not such good news. It still doesn't help his list placement. I did find out he is actually 17th on the list - which is pretty low (in my mind, I had him at 140th or something, so the 17th doesn't sound too bad but he could move up or down depending on the others on the list). Dr. Richards is going to make a call to Dr. Eckhoff at UAB tomorrow to discuss Tom's situation. Maybe Dr. Eckhoff can get some more exception points to help his chances.
I received a call this afternoon from NHC Cool Springs. They have a bed for Tom tomorrow! With the ammonia level, and the fact that his white blood cell count is up again too, I kind of doubt he will be going anywhere tomorrow. I'm going to go by NHC and complete the paperwork just so it will be ready when he can move - assuming a bed is still available.
Dr. Richards came in this evening too. He is changing some meds to see if he can help a few things. He had a specialist look at the wound on Tom's leg which is still huge and horrible. I can't believe they didn't stitch it up - it's that bad. Anyway, the pain is excrutiating for Tom, not to mention a path to infection. It doesn't look infected but it still could be contributing to some of his problems. They are really struggling to figure out what is causing the WBC and ammonia levels to escalate.
Sunday, December 2, 2012
STATUS QUO
Things are about the same with Tom. His ammonia level is still elevated but he's pretty alert. He's even been working on his iPad today.
Mornings are rough. He sleeps so deeply, when he wakes up it takes him a while to get oriented. He called me in the middle of the night twice last night. He was really out of it the first time but I was impressed that he was able to call me from his cell phone. The second time he was hungry.
We found out today that Dr. Rutland will be out all week. Dr. Richards will be looking in on Tom. He's been very good and is more involved than any of the other docs in the group (besides Dr. Miller). Tom is still getting a small amount of IV fluid just to keep the line open. The IV antibiotics were stopped yesterday. His WBC is 15 today. I'm not sure why they drew blood to test his Vanc level this evening if they are no longer giving him the antibiotic. I think the orders might be a little messed up. In fact, the nurse just confirmed that he shouldn't have had the blood drawn this evening - that was two unnecessary sticks!!
Tom's been very hungry and is eating well. He could probably stand to drink some more fluids.
He's down to two wounds that are still healing. One is well on it's way, the other is still awful!
We're still hoping & praying Tom can get moved to a skilled nursing facility close to home this week.
Mornings are rough. He sleeps so deeply, when he wakes up it takes him a while to get oriented. He called me in the middle of the night twice last night. He was really out of it the first time but I was impressed that he was able to call me from his cell phone. The second time he was hungry.
We found out today that Dr. Rutland will be out all week. Dr. Richards will be looking in on Tom. He's been very good and is more involved than any of the other docs in the group (besides Dr. Miller). Tom is still getting a small amount of IV fluid just to keep the line open. The IV antibiotics were stopped yesterday. His WBC is 15 today. I'm not sure why they drew blood to test his Vanc level this evening if they are no longer giving him the antibiotic. I think the orders might be a little messed up. In fact, the nurse just confirmed that he shouldn't have had the blood drawn this evening - that was two unnecessary sticks!!
Tom's been very hungry and is eating well. He could probably stand to drink some more fluids.
He's down to two wounds that are still healing. One is well on it's way, the other is still awful!
We're still hoping & praying Tom can get moved to a skilled nursing facility close to home this week.
Saturday, December 1, 2012
Thank You Dennis!!
Dennis spent the whole day with Tom so that I could attend the funeral for my friend, Rob. It was definitely good for Tom - he is doing much better this evening. I was worried this morning because he seemed a bit lethargic again - we really, really need a break from all of that.
Right now he has a normal diet so he was able to eat his favorite (if you have a favorite hospital food) meatloaf! Wen I got here, I asked him how he was doing, he said he was hungry. I went and got him a chicken salad croissant and fruit cup and he is eating that too! He is still getting the IV antibiotics. I don't know any of his test results for today. He said he couldn't remember what the doctor said.
He had physical therapy and said he did exercises. I guess that means he still didn't sit on the side of the bed or get up. He didn't feel as sick today, maybe because of the antibiotics. Dr. Miller said something about doing an abdominal scan if the urine test was negative. It was, so I'm wondering if they will do that next week? I'd really like to know what has caused this round of problems. It was bad enough, long enough that something should have shown up!
Praying Tom will keep improving.
Right now he has a normal diet so he was able to eat his favorite (if you have a favorite hospital food) meatloaf! Wen I got here, I asked him how he was doing, he said he was hungry. I went and got him a chicken salad croissant and fruit cup and he is eating that too! He is still getting the IV antibiotics. I don't know any of his test results for today. He said he couldn't remember what the doctor said.
He had physical therapy and said he did exercises. I guess that means he still didn't sit on the side of the bed or get up. He didn't feel as sick today, maybe because of the antibiotics. Dr. Miller said something about doing an abdominal scan if the urine test was negative. It was, so I'm wondering if they will do that next week? I'd really like to know what has caused this round of problems. It was bad enough, long enough that something should have shown up!
Praying Tom will keep improving.
Friday, November 30, 2012
Endoscopy is fine
Well, nothing out of the ordinary in Tom's esophagus or stomach so we're thankful for that. Tom did not go back for the procedure until 2 pm. It was supposed to take 5 minutes and he was going to spend 30 minutes waking up before heading back to his room. At 3:15 I called for an update. He had just made it back to his room, the unit administrator (who knows us well) said he was sitting up and seemed to be doing fine.
Tom is more alert - praise God - and he is not moaning as much. Dr. Miller said they are still waiting on results from the urine and c-diff tests, he thinks Tom might have a bladder infection. They are continuing to give him antibiotics.
Tom has finally received some "food" although it is clear liquids. He has had two helpings of beef broth and 2 small glasses of apple juice. If he tolerates that, he will be advanced to a full liquid diet and the back to real food. So far, so good. He has even asked for a soda, which he hasn't wanted in about two weeks. He likes to drink soda.
Dennis is going to hang out with Tom while I go to my friend Rob's funeral tomorrow. Tom is pretty excited about it - I am so grateful for Dennis' willingness to give up his Saturday, not to mention all of the other time he spends with Tom.
Thank you for your prayers. Hopefully whatever is plaguing Tom is working its way out of his system. It's been a tough three weeks. Hopefully by early next week Tom can be on his way to rehab to get stronger.
Tom is more alert - praise God - and he is not moaning as much. Dr. Miller said they are still waiting on results from the urine and c-diff tests, he thinks Tom might have a bladder infection. They are continuing to give him antibiotics.
Tom has finally received some "food" although it is clear liquids. He has had two helpings of beef broth and 2 small glasses of apple juice. If he tolerates that, he will be advanced to a full liquid diet and the back to real food. So far, so good. He has even asked for a soda, which he hasn't wanted in about two weeks. He likes to drink soda.
Dennis is going to hang out with Tom while I go to my friend Rob's funeral tomorrow. Tom is pretty excited about it - I am so grateful for Dennis' willingness to give up his Saturday, not to mention all of the other time he spends with Tom.
Thank you for your prayers. Hopefully whatever is plaguing Tom is working its way out of his system. It's been a tough three weeks. Hopefully by early next week Tom can be on his way to rehab to get stronger.
ENDOSCOPY TODAY
Tom will have an endoscopy this afternoon. We were told it was going to be this morning so we're very upset that Tom has to wait all day with no food or drink. His ammonia level is 56 today but his WBC is 18. Dr. Rutland started giving him IV antibiotics yesterday - I think that helped his ammonia level. Tom still "hurts everywhere" but I think he is thinking a little more clearly this morning. He's just so sore that he can't think about anything else. I can't get him to give me anything specific about his pain: type, where, etc.
I didn't see Dr. Rutland or Dr. Miller yesterday so I don't know what they are thinking. I know they ran a couple of more tests (urine & C-Diff) yesterday but do not know the results. Tom ate about half of a small lunch and dinner yesterday - I tried giving him as much as I could because I knew he would be hungry this morning. He drank a lot of tea last night. It seems like he is holding more and more fluid. That really bothers me.
Tom said he worked with the physical therapists yesterday but couldn't remember what they had him do. I checked with his nurse but she wasn't sure if he had PT or not.
The ammonia medication was really "doing its thing" yesterday so that made Tom miserable too. He told me the nurse & tech were very irritated with him. When the nurse came in last night, I commented that Tom mentioned she was irritated with him and he wanted to apologize. I think it surprised her and she said she wasn't irritated. I believe Tom!
I don't want them to find anything wrong today but I want them to be able to fix whatever is making Tom feel bad so I'm struggling on how to pray. I just want Tom to feel better!
I'll update after the procedure.
I didn't see Dr. Rutland or Dr. Miller yesterday so I don't know what they are thinking. I know they ran a couple of more tests (urine & C-Diff) yesterday but do not know the results. Tom ate about half of a small lunch and dinner yesterday - I tried giving him as much as I could because I knew he would be hungry this morning. He drank a lot of tea last night. It seems like he is holding more and more fluid. That really bothers me.
Tom said he worked with the physical therapists yesterday but couldn't remember what they had him do. I checked with his nurse but she wasn't sure if he had PT or not.
The ammonia medication was really "doing its thing" yesterday so that made Tom miserable too. He told me the nurse & tech were very irritated with him. When the nurse came in last night, I commented that Tom mentioned she was irritated with him and he wanted to apologize. I think it surprised her and she said she wasn't irritated. I believe Tom!
I don't want them to find anything wrong today but I want them to be able to fix whatever is making Tom feel bad so I'm struggling on how to pray. I just want Tom to feel better!
I'll update after the procedure.
Wednesday, November 28, 2012
More of the same
Tom still "doesn't feel well". He says his stomach hurts - I don't know whether it is from the reflux or it's upset or both. He says both. He ate some breakfast and lunch but is still very lethargic. His ammonia level is just over 100 today. Dr. Rutland is not too concerned about that - Tom is making sense and opened his eyes, listened and asked Dr. Rutland questions this morning.
Dr. Rutland will talk to Dr. Miller and they may decide to do the Endoscopy tomorrow. Tom wanted to know if he would have to go without food :-). Dr. Rutland said only until after the procedure. Physical Therapy came in while I was there at lunch so I stayed to "help". Tom kept telling me to "go to work" because he didn't want to do anything and I basically forced him to participate. He sat up in bed and did some leg lifts and arm lifts. He moaned and complained the entire time but I was very glad he did it and told him so.
I wish I knew what was going on with him. I don't think it is just the ammonia - I know he is exhausted from the reflux because he has an episode every time he eats or drinks anything - he ended up with the hiccups about 4 times last night! The swelling in his feet has gone down but he still has a lot of fluid. All of his blood tests are stable and his WBC is down to 14. I will feel better if the Endoscopy is done. Hopefully they won't find anything, but if they do, at least we can address it and then maybe Tom will feel better.
Tom called at 11:30 last night and again at 1:30 looking for me. I felt so bad. I was encouraged that he was able to dial the phone (one call was from the room phone and one call was from his cell phone). I know it seems like something so little but when he's lethargic, dialing a phone can be complicated. I translate that to lower ammonia levels even though that is not always the case.
Dr. Rutland told me today that he shares his notes with UAB but that doesn't include the hospital information so tonight I will assemble the dates Tom has been hospitalized and send it to them tomorrow. I have most of it along with what he was primarily admitted for. Dr. Rutland wants to be sure they know how many times he has been hospitalized - I normally call them each time but it might not hurt to have a summary. It's actually very scary to see how much time Tom has spent in the hospital. I doubt it will really matter as far as the list position but maybe it can be used for even more exception points. At this point, I will try just about anything!!!
Dr. Rutland will talk to Dr. Miller and they may decide to do the Endoscopy tomorrow. Tom wanted to know if he would have to go without food :-). Dr. Rutland said only until after the procedure. Physical Therapy came in while I was there at lunch so I stayed to "help". Tom kept telling me to "go to work" because he didn't want to do anything and I basically forced him to participate. He sat up in bed and did some leg lifts and arm lifts. He moaned and complained the entire time but I was very glad he did it and told him so.
I wish I knew what was going on with him. I don't think it is just the ammonia - I know he is exhausted from the reflux because he has an episode every time he eats or drinks anything - he ended up with the hiccups about 4 times last night! The swelling in his feet has gone down but he still has a lot of fluid. All of his blood tests are stable and his WBC is down to 14. I will feel better if the Endoscopy is done. Hopefully they won't find anything, but if they do, at least we can address it and then maybe Tom will feel better.
Tom called at 11:30 last night and again at 1:30 looking for me. I felt so bad. I was encouraged that he was able to dial the phone (one call was from the room phone and one call was from his cell phone). I know it seems like something so little but when he's lethargic, dialing a phone can be complicated. I translate that to lower ammonia levels even though that is not always the case.
Dr. Rutland told me today that he shares his notes with UAB but that doesn't include the hospital information so tonight I will assemble the dates Tom has been hospitalized and send it to them tomorrow. I have most of it along with what he was primarily admitted for. Dr. Rutland wants to be sure they know how many times he has been hospitalized - I normally call them each time but it might not hurt to have a summary. It's actually very scary to see how much time Tom has spent in the hospital. I doubt it will really matter as far as the list position but maybe it can be used for even more exception points. At this point, I will try just about anything!!!
Tuesday, November 27, 2012
You decide
Ok, every time I post that Tom as improved, he gets worse so I'm going to provide an update and you can decide whether it is better or not.
I hit the jackpot for doctors visits today. During the morning visit, Dr. Miller came by. He and Tom discussed the reflux issues and were trying to decide whether to change Tom's medications or do an Endoscopy. Tom was really hungry and wanted to eat (which meant he couldn't have the Endoscopy today) so Dr. Miller decided to increase the medication. Tom ate a decent breakfast.
At lunch, Dr. Rutland came by. He said Tom's WBC is down to 16. The tests are all normal (for Tom), no fever. There is one other test he was waiting on but if the WBC continues to go down they will proceed with moving Tom to rehab. Tom ate a decent lunch.
Tom still "doesn't feel good". He asked the physical therapy folks to come back later but I'm not sure if they did. I'm disappointed that he sent them away but when you don't feel good, you don't feel good.
In the "why you should give your neighbor a key to your home" department, I received the following message from our next door neighbor: "Gail has prepared a dinner and dessert for you today. I put it in your refrigerator." Am I blessed or what????!!!!
Now I just need to figure out how to get home earlier tonight!! Gail is an awesome cook!
I hit the jackpot for doctors visits today. During the morning visit, Dr. Miller came by. He and Tom discussed the reflux issues and were trying to decide whether to change Tom's medications or do an Endoscopy. Tom was really hungry and wanted to eat (which meant he couldn't have the Endoscopy today) so Dr. Miller decided to increase the medication. Tom ate a decent breakfast.
At lunch, Dr. Rutland came by. He said Tom's WBC is down to 16. The tests are all normal (for Tom), no fever. There is one other test he was waiting on but if the WBC continues to go down they will proceed with moving Tom to rehab. Tom ate a decent lunch.
Tom still "doesn't feel good". He asked the physical therapy folks to come back later but I'm not sure if they did. I'm disappointed that he sent them away but when you don't feel good, you don't feel good.
In the "why you should give your neighbor a key to your home" department, I received the following message from our next door neighbor: "Gail has prepared a dinner and dessert for you today. I put it in your refrigerator." Am I blessed or what????!!!!
Now I just need to figure out how to get home earlier tonight!! Gail is an awesome cook!
Monday, November 26, 2012
Waiting . . .
On the blood test results from this afternoon. Tom is not feeling well this evening, his stomach has been upset. He couldn't work with the physical therapists and tried to send the wound care folks away but the nurse told him either the wound care folks would change his leg dressing or she would, so he gave in. I told her this evening to put her foot down and Tom would probably go along.
He doesn't seem to have a fever but he's been sleeping a lot. I'm sure he'll wake up and be feeling much better when it's time for me to leave!
He's getting lasix but probably needs some more. He's been holding onto more fluid. I always worry about that.
Ok, new WBC is 18. That's better and everything else is the same. Still don't know what is going on. I guess we will wait it out and see.
I'm attaching (i think) a photo of a beautiful poinsettia that was sitting on our counter when I got home last night - a gift from our super- neighbors!! This may be the only Christmas decoration our house gets unless Tom comes home soon. That's ok though. Honestly, I'd rather take the time to deep clean the house.
I'll post if anything changes.
He doesn't seem to have a fever but he's been sleeping a lot. I'm sure he'll wake up and be feeling much better when it's time for me to leave!
He's getting lasix but probably needs some more. He's been holding onto more fluid. I always worry about that.
Ok, new WBC is 18. That's better and everything else is the same. Still don't know what is going on. I guess we will wait it out and see.
I'm attaching (i think) a photo of a beautiful poinsettia that was sitting on our counter when I got home last night - a gift from our super- neighbors!! This may be the only Christmas decoration our house gets unless Tom comes home soon. That's ok though. Honestly, I'd rather take the time to deep clean the house.
I'll post if anything changes.
Ammonia down again
The good news is Tom's ammonia level is down to 64 today and he is "himself" again. The not-so-great news is that his white blood cell count is up to 20 with no explanation thus far. I missed Dr. Rutland's visit today but he called and said he was going to run some more tests and re-test Tom's blood this afternoon to see if there are any changes. He won't be going anywhere today but the social worker is looking for an opening in a skilled nursing facility for rehab.
I'm not sure how Tom has taken this latest news. We did know about the WBC from my visit this morning. Dr. Rutland is giving Tom another med to help with some reflux issues. Tom is not as sore today and did not complain about his care overnight. He did not even seem too upset when I told him I wouldn't be there first thing this morning. I know that is because of the prayers of his prayer-warriors.
I'll provide an update later this evening.
On another note, I ask that you pray for the girlfriend and family of my friend, Rob Brooks who suffered a broken neck in a mountain biking accident on Thursday. Rob passed away yesterday after developing breathing complications and choosing not to be placed on a ventilator. His girlfriend, Heather, is also a friend and co-worker of mine. They came to visit us in the ICU waiting room when Tom first got sick. God has ordered our steps and numbered our days. Each one is precious.
I'm not sure how Tom has taken this latest news. We did know about the WBC from my visit this morning. Dr. Rutland is giving Tom another med to help with some reflux issues. Tom is not as sore today and did not complain about his care overnight. He did not even seem too upset when I told him I wouldn't be there first thing this morning. I know that is because of the prayers of his prayer-warriors.
I'll provide an update later this evening.
On another note, I ask that you pray for the girlfriend and family of my friend, Rob Brooks who suffered a broken neck in a mountain biking accident on Thursday. Rob passed away yesterday after developing breathing complications and choosing not to be placed on a ventilator. His girlfriend, Heather, is also a friend and co-worker of mine. They came to visit us in the ICU waiting room when Tom first got sick. God has ordered our steps and numbered our days. Each one is precious.
Sunday, November 25, 2012
EKG is OK
Tom's EKG is normal. Dr. Richards was actually here when they did the test. He was so kind. He did not run labs this morning to save Tom from being stuck. I'm pretty certain his ammonia level is up though. I just hate it. It's so hard to help Tom. He ate just a few bites of his lunch, I doubt it will be much better with dinner but I'm going to try. He is still complaining about his chest hurting. They put a pain patch on his chest. He continues to sleep most of the time and gets really upset if I even mention going home or to work tomorrow. Leaving is never easy but will be especially hard tonight. I've been here so much the past four days.
Praying for a better tomorrow.
Praying for a better tomorrow.
Not a better day
Tom is feeling pretty bad today. His chest is hurting (right side), he told me it feels more like muscle pain but the pain is constant. He can't tell me if he remembers doing anything specific. The nurse called the doctor and they are going to run an EKG. It was hurting last night, in fact they put the pain patch for his back on his ribs instead. His blood pressure has been running a little high. I don't think they are related. He is more lethargic today, I suspect his ammonia level is up again but I'm waiting on the nurse to get the lab results.
He is not calling out to the nurses station for help. I called them directly after I talked to him this morning and then he called me an hour or so later and told me he needed help again. When I asked him if he called the nurses station, he said yes. I called the nurses station again and asked them to check on him. The nurses confirmed for me that he has not called out all morning. It was not a pretty sight when I got here after church. He said he called for help - in all fairness, I called for help but pretty much had everything done before they showed up. He can call me so I know he can connect the dots. It is frustrating . . . for both of us!
He did not eat any breakfast. He told me he would order it for himself. I'm sure he fell asleep. I do wish the nurses would have followed up on that. Anyway, he has some lunch but his appetite is not too good. He has not had physical therapy yet, I'm not really sure if he will have it today. I hope so.
Tom said a surgeon came in to look at the wounds on his legs. I'm trying to confirm this. Whoever it was said the leg wounds were pretty bad but they were doing the right things for them?!?!
Tom can fall asleep faster than anyone I know and sleep deeply. He has had some crazy dreams too. It takes him quite a while to wake up so I think that is part of the problem. I don't think we can do anything to fix that, it's just a matter of getting everyone to understand.
My sweet neighbors are letting the pups out this afternoon so I only have to make one trip to the hospital today. I originally told Tom I was going to come straight from church but I decided to head back home instead. I needed to get some laundry done! I stopped by Walmart on the way to buy a few things - it was my only "shopping" trip of the long weekend! I spent $49.99. I purchased a half gallon of milk for myself and some tea for Tom. The rest was spent on oatmeal, turkey and treats - all for the dogs!!! They are the only ones eating at home! They are not spoiled.
He is not calling out to the nurses station for help. I called them directly after I talked to him this morning and then he called me an hour or so later and told me he needed help again. When I asked him if he called the nurses station, he said yes. I called the nurses station again and asked them to check on him. The nurses confirmed for me that he has not called out all morning. It was not a pretty sight when I got here after church. He said he called for help - in all fairness, I called for help but pretty much had everything done before they showed up. He can call me so I know he can connect the dots. It is frustrating . . . for both of us!
He did not eat any breakfast. He told me he would order it for himself. I'm sure he fell asleep. I do wish the nurses would have followed up on that. Anyway, he has some lunch but his appetite is not too good. He has not had physical therapy yet, I'm not really sure if he will have it today. I hope so.
Tom said a surgeon came in to look at the wounds on his legs. I'm trying to confirm this. Whoever it was said the leg wounds were pretty bad but they were doing the right things for them?!?!
Tom can fall asleep faster than anyone I know and sleep deeply. He has had some crazy dreams too. It takes him quite a while to wake up so I think that is part of the problem. I don't think we can do anything to fix that, it's just a matter of getting everyone to understand.
My sweet neighbors are letting the pups out this afternoon so I only have to make one trip to the hospital today. I originally told Tom I was going to come straight from church but I decided to head back home instead. I needed to get some laundry done! I stopped by Walmart on the way to buy a few things - it was my only "shopping" trip of the long weekend! I spent $49.99. I purchased a half gallon of milk for myself and some tea for Tom. The rest was spent on oatmeal, turkey and treats - all for the dogs!!! They are the only ones eating at home! They are not spoiled.
Saturday, November 24, 2012
Unhappiness
Tom's nurse came in and broke the news that Tom is not going home today either. She said Dr. Richards is going to get them to look for a skilled nursing facility (rehab) for Tom on Monday just so he can get a bit stronger. I don't think this is a bad thing as long as he can get close to home.
Tom's ammonia level is up again today. They are adjusting and stopping some of his meds to try and help with the ammonia level, his reflux challenges and his fragile skin. I am thankful for a on-call doc who is willing to make some changes to help Tom.
His friend Dave came by today, it really lifted Tom's spirits. I can't tell you how much he enjoys seeing Dennis and Dave. It is a relief for me when they come by too.
I want to ask for additional prayer tonight. Of course, always for Tom and his healing but also for a friend of mine, Rob Brooks. He suffered a broken neck in a mountain biking accident on Thursday. He has no feeling in his legs and the docs don't think that will change. Initially he was feeling pain in his arms and could move them. Last night he started having trouble breathing and he has refused to be placed on a ventilator because he doesn't want to live "this way". Folks, life is not always fair and we don't understand it's twists and turns. Please love God with your heart, mind and soul and love your family, friends and neighbors.
Tom's ammonia level is up again today. They are adjusting and stopping some of his meds to try and help with the ammonia level, his reflux challenges and his fragile skin. I am thankful for a on-call doc who is willing to make some changes to help Tom.
His friend Dave came by today, it really lifted Tom's spirits. I can't tell you how much he enjoys seeing Dennis and Dave. It is a relief for me when they come by too.
I want to ask for additional prayer tonight. Of course, always for Tom and his healing but also for a friend of mine, Rob Brooks. He suffered a broken neck in a mountain biking accident on Thursday. He has no feeling in his legs and the docs don't think that will change. Initially he was feeling pain in his arms and could move them. Last night he started having trouble breathing and he has refused to be placed on a ventilator because he doesn't want to live "this way". Folks, life is not always fair and we don't understand it's twists and turns. Please love God with your heart, mind and soul and love your family, friends and neighbors.
Friday, November 23, 2012
Still here
We're struggling with home vs. something else. Tom does not want to stay in the hospital. I had hoped they could get him into a rehab center today but I guess they have a holiday today too so right now, he will be here until at least Monday. That has not been sitting well with Tom. Although he stood up three times during physical therapy, he was still very weak and needed help from both of the therapists. I don't think it is help I can provide by myself. I had sort of hoped this would convince him he needs to be stronger and if they could have moved him to rehab today, it might have made a difference. He is feeling better from a back pain standpoint. His ammonia level is back up in the 80's today!?! I just don't know what to do or what to tell him. I am so sick of this place too but I just don't think we can manage at home alone. It really upsets Tom when I tell him this. The physical therapists tore another spot on his leg today. That makes a total of four since he got here last Thursday. That scares him too and wants me here all the time so I can take care of him. It does amaze me how I can take care of him here by myself and not tear his skin but no one else can. I'm probably much slower though and they are in a hurry. He keeps telling them when it hurts, I don't understand why they don't stop and listen to the patient!!!
I desperately want him to get some rehab. If we had help at home, I'd be more inclined to push to get him discharged, but we don't. Please pray he will be patient (no pun intended). I don't want him to push himself and then get hurt again.
He had a good tech tonight, I'm not too sure about the nurse. She's new to us, that could mean trouble. Tom doesn't really like the folks who don't know him or understand his stubbornness!
I desperately want him to get some rehab. If we had help at home, I'd be more inclined to push to get him discharged, but we don't. Please pray he will be patient (no pun intended). I don't want him to push himself and then get hurt again.
He had a good tech tonight, I'm not too sure about the nurse. She's new to us, that could mean trouble. Tom doesn't really like the folks who don't know him or understand his stubbornness!
Thursday, November 22, 2012
Happy Thanksgiving
Well, Tom is still sore but doing better. Ammonia level is in the 40's - Yahoo!!!!!!!!
Dr. May came in and was ready to discharge Tom but we decided to hold off since he hasn't been on his feet for a week. Dr. May will have physical therapy come in today and help him get moving some and maybe he can go home tomorrow! That really perked him up so hopefully he will push through the pain to move! He's still a bit groggy with the pain meds but we're going to keep feeding them to him.
Tom called and talked to his uncle and cousins today - he was so excited to hear their voices. He talked to his dad before I got here this morning too so it's been a great day for him!
He got quite a bit of sleep last night and the nurses covered for me so that I could go home and get some sleep too. I'm happy to report that the kitchen remodel is officially done so I'm putting it all back together again. It needs a good deep cleaning so I hope I can get that done sometime this weekend. We had some other rooms painted so they need to be reassembled as well. There is plenty to do at home so I really, really hope Tom can move well enough to get home tomorrow.
I verified that Thanksgiving is the only holiday Tom has not spent in the hospital since he first got sick. Lets hope and pray it is the last holiday (unless of course he's getting a transplant)!
We pray that you all will have a safe and blessed Thanksgiving!
Dr. May came in and was ready to discharge Tom but we decided to hold off since he hasn't been on his feet for a week. Dr. May will have physical therapy come in today and help him get moving some and maybe he can go home tomorrow! That really perked him up so hopefully he will push through the pain to move! He's still a bit groggy with the pain meds but we're going to keep feeding them to him.
Tom called and talked to his uncle and cousins today - he was so excited to hear their voices. He talked to his dad before I got here this morning too so it's been a great day for him!
He got quite a bit of sleep last night and the nurses covered for me so that I could go home and get some sleep too. I'm happy to report that the kitchen remodel is officially done so I'm putting it all back together again. It needs a good deep cleaning so I hope I can get that done sometime this weekend. We had some other rooms painted so they need to be reassembled as well. There is plenty to do at home so I really, really hope Tom can move well enough to get home tomorrow.
I verified that Thanksgiving is the only holiday Tom has not spent in the hospital since he first got sick. Lets hope and pray it is the last holiday (unless of course he's getting a transplant)!
We pray that you all will have a safe and blessed Thanksgiving!
Wednesday, November 21, 2012
Sleeping beauty
Tom is still in pain but so far has been sleeping most of the evening. I am worried what will happen when he needs to go to the bathroom! Dr. Rutland has ordered a different pain med that Tom can have every six hours. Hopefully it will keep him "knocked out" for tonight. His stomach is a little upset so he has not eaten anything since last night. He is still lying flat although it is ok for him to sit up if he wants.
I've been online looking at the recovery time for this procedure. Everything says it is outpatient or an overnight stay with some pain for about two weeks. Nothing indicates what Tom seems to be experiencing. Tm told me they only fixed two and the radiologist told him he would need to come back next week to get the other two done as an outpatient procedure!! What?!?!? I kinda don't see that happening at the moment. It will be hard to tell by then if this is really going to fix Tom's pain. I was impressed that Tom remembered that to tell me!
I'm wondering if we can set up a FaceTime session overnight so when he wakes up, he can hear my voice and see me (if he opens his eyes).
Thanks to our many prayer warriors. I've heard from two good friends today who have really encouraged me. Of course, my co-workers listen to me vent over and over and still make me laugh and give me strength. Then there is our family, for them I am most thankful. We always get a call, email, text or card from one or more of them at just the right moment.
I've been online looking at the recovery time for this procedure. Everything says it is outpatient or an overnight stay with some pain for about two weeks. Nothing indicates what Tom seems to be experiencing. Tm told me they only fixed two and the radiologist told him he would need to come back next week to get the other two done as an outpatient procedure!! What?!?!? I kinda don't see that happening at the moment. It will be hard to tell by then if this is really going to fix Tom's pain. I was impressed that Tom remembered that to tell me!
I'm wondering if we can set up a FaceTime session overnight so when he wakes up, he can hear my voice and see me (if he opens his eyes).
Thanks to our many prayer warriors. I've heard from two good friends today who have really encouraged me. Of course, my co-workers listen to me vent over and over and still make me laugh and give me strength. Then there is our family, for them I am most thankful. We always get a call, email, text or card from one or more of them at just the right moment.
Back in his room
Tom is back in his room and is in extreme pain. I could hear him yelling down the hall! He said they didn't tell him it was going to hurt this had . . . And he's right! They said the pain would be gone! He said "everything hurts"!
He's been given the mild pain meds he can take all the time. I've asked the nurse to check with Dr. Rutland to see if they can give him something stronger for today. They did make two incisions in his back so that is sounds more like the Kyphoplasty procedure instead of the Vertebroplasty. Tom said being on his stomach wasn't as bad as he thought it was going to be. He has to lay flat for 4 hours. He's pretty drowsy which is good but when he wakes up, he screams in pain. His nurse said he was originally screaming for me and one of the first things Tom said to me when I got here was he didn't want me to leave. It's gonna be a long, long night!
I've got to go back to the office for a couple of hours and then I'll be here this evening. Please pray for both of us!!!
He's been given the mild pain meds he can take all the time. I've asked the nurse to check with Dr. Rutland to see if they can give him something stronger for today. They did make two incisions in his back so that is sounds more like the Kyphoplasty procedure instead of the Vertebroplasty. Tom said being on his stomach wasn't as bad as he thought it was going to be. He has to lay flat for 4 hours. He's pretty drowsy which is good but when he wakes up, he screams in pain. His nurse said he was originally screaming for me and one of the first things Tom said to me when I got here was he didn't want me to leave. It's gonna be a long, long night!
I've got to go back to the office for a couple of hours and then I'll be here this evening. Please pray for both of us!!!
Surgery update
I know they are done with the procedure but Tom has not returned to his room yet. When I called for an update, his nurse told me they had just finished up and that "it took a while". He was not sure why. Nothing with us is ever easy!
Tom's ammonia level was back up to 110 this morning. Dr. Rutland came by before they took Tom down. I asked him why he thinks the ammonia level won't go down. His response was "because his liver is shot". We know it is not good but I think if it were that bad, he would be higher on the list because his kidneys would be affected. I am trying not to worry that this is going to be the "norm". Tom was communicating clearly but seemed more lethargic this morning. He said he ate a little of his dinner when we finally got it at 8:45 last night. He also said he just wasn't feeling good this morning. If this procedure solves the back pain and he can get some food in him, maybe he will feel better.
I don't know if Rutland is on-call this weekend or not. I had hoped Tom might be well enough to be discharged tomorrow but if his ammonia level is high and he cannot get up and down, that probably won't happen. I can still hope they might send him to rehab though.
Tom's ammonia level was back up to 110 this morning. Dr. Rutland came by before they took Tom down. I asked him why he thinks the ammonia level won't go down. His response was "because his liver is shot". We know it is not good but I think if it were that bad, he would be higher on the list because his kidneys would be affected. I am trying not to worry that this is going to be the "norm". Tom was communicating clearly but seemed more lethargic this morning. He said he ate a little of his dinner when we finally got it at 8:45 last night. He also said he just wasn't feeling good this morning. If this procedure solves the back pain and he can get some food in him, maybe he will feel better.
I don't know if Rutland is on-call this weekend or not. I had hoped Tom might be well enough to be discharged tomorrow but if his ammonia level is high and he cannot get up and down, that probably won't happen. I can still hope they might send him to rehab though.
Tuesday, November 20, 2012
Kyphoplasty Update
Gotta love these new words!
Since Tom had already eaten breakfast this morning, he could not have the surgery today so he is going to have it tomorrow. I don't know what time - hopefully in the morning. He seems to be OK with it so that's good. I hope his ammonia level is even lower tomorrow - sometimes the anesthesia can mess with that.
That was all the info Tom had at lunch. I'll try to catch his nurse this afternoon for any more details.
Addendum: Tom's surgery will be around 9 am tomorrow. They are going to do something called Vertebroplasty instead. They can sedate him for it instead of putting him to sleep. The anesthesiologist has come by to get the authorization forms signed. Tom will have to be on his stomach for the procedure. That will probably be uncomfortable for him. Prayers requested.
Since Tom had already eaten breakfast this morning, he could not have the surgery today so he is going to have it tomorrow. I don't know what time - hopefully in the morning. He seems to be OK with it so that's good. I hope his ammonia level is even lower tomorrow - sometimes the anesthesia can mess with that.
That was all the info Tom had at lunch. I'll try to catch his nurse this afternoon for any more details.
Addendum: Tom's surgery will be around 9 am tomorrow. They are going to do something called Vertebroplasty instead. They can sedate him for it instead of putting him to sleep. The anesthesiologist has come by to get the authorization forms signed. Tom will have to be on his stomach for the procedure. That will probably be uncomfortable for him. Prayers requested.
Ammonia down to 74!!!!!
Yes! Tom's ammonia level is down and he is more "himself" today! I told him it was good to have him back.
Dr. Rutland came by this morning and gave us the good news. He also told us that the spine specialist had already seen Tom (don't really know when that happened) but they are moving forward with scheduling the Kyphoplasty procedure on Tom's back. This will require Tom to be put to sleep so that's always scary. I don't know how quickly this will happen - today, tomorrow, next week, next month . . . The radiology team at Baptist does this so it may be easier to schedule than if it was being done by an orthopedic surgeon. I think today would be good. Then, if Tom's ammonia level is better, he could go home tomorrow or Thursday :-)
I'll post an update as soon as we know something about the surgery.
Dr. Rutland came by this morning and gave us the good news. He also told us that the spine specialist had already seen Tom (don't really know when that happened) but they are moving forward with scheduling the Kyphoplasty procedure on Tom's back. This will require Tom to be put to sleep so that's always scary. I don't know how quickly this will happen - today, tomorrow, next week, next month . . . The radiology team at Baptist does this so it may be easier to schedule than if it was being done by an orthopedic surgeon. I think today would be good. Then, if Tom's ammonia level is better, he could go home tomorrow or Thursday :-)
I'll post an update as soon as we know something about the surgery.
Monday, November 19, 2012
A visit from the orthopedic doc
The orthopedic doc just came by and talked to us about Tom's back. The story is the same, compression fractures in about 4 different places. The fractures are not new. He basically provided a couple of options, a brace or surgery. We kind of came to the conclusion that with Tom's situation and limited mobility, the brace would be ok but probably not the best. Of course, surgery isn't a given. The docs have to determine if Tom's liver can handle the anesthesia. The doc is going to send a spine specialist over to see Tom, probably tomorrow, to evaluate Tom and talk to him about the surgery option. Then Tom will be able to make a decision. I don't like either option - the surgery concerns me but sounds like it would be the best long term solution. I don't see how a brace will fix what has been happening - it's supposed to alleviate the pain when Tom is walking. His greater pain is when he is trying to get up from a seated position. To be continued . . .
Tom is still not hungry so I've been unable to get him to eat. He seemed a little more alert when I got here but is really struggling now. He gets so frustrated with himself and others. I can tell it's irritating the nurse and tech. I've tried to explain that he is just confused. They also gave him 2 pain pills so that is probably not helping. Praying hard for improvement tomorrow!
Tom is still not hungry so I've been unable to get him to eat. He seemed a little more alert when I got here but is really struggling now. He gets so frustrated with himself and others. I can tell it's irritating the nurse and tech. I've tried to explain that he is just confused. They also gave him 2 pain pills so that is probably not helping. Praying hard for improvement tomorrow!
MRI
I went to see Tom at lunch but he was not in his room. He was somewhere getting an MRI on his back. I looked where they sent me but never found him (or anyone else to ask). Anyway, I know that has been done and once the results are read, I guess an orthopedic doc will meet with him (us). I don't think his day has gone much better. He was not hungry for lunch and told the nurses his indigestion was too painful. I understand Dr. Rutland is aware of this.
It doesn't sound like they are doing anything different for the ammonia level at this point. He needs to eat more which will help the medicine work. I'll see if I can get him to do that this Evening. He is only eating grapes.
It doesn't sound like they are doing anything different for the ammonia level at this point. He needs to eat more which will help the medicine work. I'll see if I can get him to do that this Evening. He is only eating grapes.
Still suffering
Just a quick note I let you know that Tom's ammonia level is back up to 133 today. His red and white blood counts are better so still no sign of what could be wrong. Dr. Rutland did not come in while I was there this morning so I'll try again at lunch. Tom is really suffering. He wants me there all the time right now. With the holiday and travels, he really won't have any other visitors. Tom has not been up - his back still hurts a great deal. Please pray they will find a solution to this ammonia problem quickly!
Sunday, November 18, 2012
Ammonia Fog
Tom remains in what I call the "ammonia fog". He communicates pretty well but is lethargic. His ammonia level is up one point today but his WBC and hematocrit are better. It seems there is something still lurking that is causing his ammonia level to stay up, it's just not obvious in his blood work. I can't remember it ever being this tough to get under control. The on-call doc has increased one of his meds so maybe that will help. He has eaten pretty good and the staff seems to be checking on him frequently.
I was the "bad wife" again last night. When I left, I told his tech that if Tom wanted to call me at 5 am to try and hold off until at least 6. When I called at 6:15 to order his breakfast, they told me he slept a good bit last night so that was a prayer answered! He was sleeping when I got here and often slips into a little nap. It felt good to get some sleep myself.
It is "backsplash weekend" at home so our kitchen is somewhat out of commission. Again the timing worked out since we are not there much. After that there is just some painting which I think will also get done this week - I'm hopeful anyway.
It is hard to be missing the memorial service today for the parents of my friend Amber. I just felt like I couldn't leave Tom. There are folks who would have stayed with him and had he been more alert, it would have been easier. I was a tad worried about the 5-hour each way drive by myself. Normally that would not be a problem but I tend to get very sleepy even driving to work. She has been through so much, I ask that you pray she will have peace.
I'm off to run a couple of errands and check on things at home.
I was the "bad wife" again last night. When I left, I told his tech that if Tom wanted to call me at 5 am to try and hold off until at least 6. When I called at 6:15 to order his breakfast, they told me he slept a good bit last night so that was a prayer answered! He was sleeping when I got here and often slips into a little nap. It felt good to get some sleep myself.
It is "backsplash weekend" at home so our kitchen is somewhat out of commission. Again the timing worked out since we are not there much. After that there is just some painting which I think will also get done this week - I'm hopeful anyway.
It is hard to be missing the memorial service today for the parents of my friend Amber. I just felt like I couldn't leave Tom. There are folks who would have stayed with him and had he been more alert, it would have been easier. I was a tad worried about the 5-hour each way drive by myself. Normally that would not be a problem but I tend to get very sleepy even driving to work. She has been through so much, I ask that you pray she will have peace.
I'm off to run a couple of errands and check on things at home.
Saturday, November 17, 2012
Wake up call
So much for sleeping in! Tom called at 5 this morning. He really wanted me to come to the hospital. I tried to postpone the visit but felt bad and went to see him it's so hard to tell him no! At least I got about 5 consecutive hours of sleep so that's better than anything I got this past week. He is doing a little bit better. His ammonia level is down to 114 but he is still struggling with the cobwebs.
He was hungry so I brought him some fruit and ordered his breakfast and lunch. He is still really struggling with his vision - specifically close up. He has his glasses but he can't seem to focus on anything right in front of him.
Dr. Forte is on call and has come by. I like him but he tends to want to get in and get out. There is not really anything different for them to do. I mentioned Tom's hematocrit, which is now 25.8 but I doubt they will do anything unless it drops below 25. So, we will just hang out here and see what Dr. Rutland says on Monday. Hopefully Tom can be seen by an orthopedic specialist about his back then too.
Praying Tom's ammonia level continues to fall - quickly!!
He was hungry so I brought him some fruit and ordered his breakfast and lunch. He is still really struggling with his vision - specifically close up. He has his glasses but he can't seem to focus on anything right in front of him.
Dr. Forte is on call and has come by. I like him but he tends to want to get in and get out. There is not really anything different for them to do. I mentioned Tom's hematocrit, which is now 25.8 but I doubt they will do anything unless it drops below 25. So, we will just hang out here and see what Dr. Rutland says on Monday. Hopefully Tom can be seen by an orthopedic specialist about his back then too.
Praying Tom's ammonia level continues to fall - quickly!!
Friday, November 16, 2012
In the hospital
It's has been such a rough week, I hate to tell you that it ends with Tom in the hospital! He tweaked his back yesterday morning and he basically didn't move the rest of the day. I had a feeling it would be a problem. When I got home from work, the physical therapist and the caregiver were trying to get him to stand and he just couldn't do it because of the pain. They were both so kind to spend some extra time with Tom but when they left, Tom and I had to decide what to do. He had to be in intense pain to agree to go to the hospital. I called the paramedics. To add insult to injury, his ammonia level just kept playing tricks on him. It's been like a roller coaster all week. When he got to the hospital it was 132! We worked so hard to get it under control this week, I was pretty upset it was still so high. Of course, everything else is fine.
He was in the ER until about 10:30 last night before being moved to a room. I stayed until the nurse got all the info and then headed home about 11:45.
He was still lethargic this morning. I got him some breakfast and he perked up some. That has been the case all week. He's lethargic in the mornings and evenings but fine during the day. I missed Dr. Rutland's visit today but he called me tonight and told me it is "basically the same song, 15th verse". He ordered a consult from Dr. Miller and he came by this evening. I don't think any decisions were made - he is ordering some kind of antibiotic but I think Tom is already taking it.
I sent Tom's lab work from last night to UAB today and our case manager called me back right away. I was really hoping for great news. It wasn't bad news but not exactly what I had hoped. Tom's MELD score is the same - at least it didn't drop. I asked her about the exception points that Tom has that expire on January 2. I wanted to know if that is a "one and done" kind of thing or if we can petition for additional points again. She said a few weeks before they expire, Dr. Eckhoff would submit the paperwork for exception points again. I was happy to hear that. We continued to talk about Tom's challenges. I mentioned the problems with his back. She asked if he had had a "block" or anything. I told her I had been thinking about something like that and was planning to ask Dr. Rutland about it. So, when Dr. Rutland called me, I asked. He said that it might be possible and is going to order an orthopedic consult on Monday. Maybe he can get a block or cortisone shot or something to help with the pain so he can get moving more.
I talked to a friend of mine who is willing to work with Tom at home on building his strength so I'm anxious to get that started. I think it will be really good for Tom.
Another one of my wonderful neighbors came over during all of the excitement at the house last night. He was so sweet and offered help anytime we needed it. He also mentioned he loves to cook and does all the cooking and would love to cook us some meals - score!!! I think I'll call him and tell him to cook for four every night!! That's God reminding me He is with us in the midst of all of this.
Tom has had a decent dinner. He communicates pretty well, he doesn't feel pain as long as he doesn't have to move a whole lot. Last night he was put in an "overflow" ward and was moved to another room this evening. He is still lethargic to me. His hematocrit was pretty low but I guess it wasn't low enough to need blood quite yet. Something must have been lost in the translation and they didn't do bloodwork this morning - so it has been ordered for tomorrow.
He has another new wound thanks to the team last night. Something else to worry about . . .
He was in the ER until about 10:30 last night before being moved to a room. I stayed until the nurse got all the info and then headed home about 11:45.
He was still lethargic this morning. I got him some breakfast and he perked up some. That has been the case all week. He's lethargic in the mornings and evenings but fine during the day. I missed Dr. Rutland's visit today but he called me tonight and told me it is "basically the same song, 15th verse". He ordered a consult from Dr. Miller and he came by this evening. I don't think any decisions were made - he is ordering some kind of antibiotic but I think Tom is already taking it.
I sent Tom's lab work from last night to UAB today and our case manager called me back right away. I was really hoping for great news. It wasn't bad news but not exactly what I had hoped. Tom's MELD score is the same - at least it didn't drop. I asked her about the exception points that Tom has that expire on January 2. I wanted to know if that is a "one and done" kind of thing or if we can petition for additional points again. She said a few weeks before they expire, Dr. Eckhoff would submit the paperwork for exception points again. I was happy to hear that. We continued to talk about Tom's challenges. I mentioned the problems with his back. She asked if he had had a "block" or anything. I told her I had been thinking about something like that and was planning to ask Dr. Rutland about it. So, when Dr. Rutland called me, I asked. He said that it might be possible and is going to order an orthopedic consult on Monday. Maybe he can get a block or cortisone shot or something to help with the pain so he can get moving more.
I talked to a friend of mine who is willing to work with Tom at home on building his strength so I'm anxious to get that started. I think it will be really good for Tom.
Another one of my wonderful neighbors came over during all of the excitement at the house last night. He was so sweet and offered help anytime we needed it. He also mentioned he loves to cook and does all the cooking and would love to cook us some meals - score!!! I think I'll call him and tell him to cook for four every night!! That's God reminding me He is with us in the midst of all of this.
Tom has had a decent dinner. He communicates pretty well, he doesn't feel pain as long as he doesn't have to move a whole lot. Last night he was put in an "overflow" ward and was moved to another room this evening. He is still lethargic to me. His hematocrit was pretty low but I guess it wasn't low enough to need blood quite yet. Something must have been lost in the translation and they didn't do bloodwork this morning - so it has been ordered for tomorrow.
He has another new wound thanks to the team last night. Something else to worry about . . .
Monday, November 12, 2012
Ups and Downs
Well, it's been quite a weekend. Tom was doing pretty well after the abrupt discharge from the hospital. He wasn't feeling well all day Saturday - we're not really sure why. He started getting disoriented Saturday night. I gave him extra medicine and I was up with him every 30 to 45 minutes through the night - I am not exaggerating! He was better Sunday but disoriented again last night. We did get a couple of hours of continuous sleep but he was not better this morning, in fact he was getting worse. A caregiver was supposed to be here at 7 am, I normally would have left for work at 6:30 if the person I know is coming has been here before. But because Tom was not doing so well, I decided to wait . . . And wait. She never came. I called at 7:45 to find out what was going on. They told me our assigned caregiver was ill and would not be here - apparently someone was supposed to call but they didn't. Now I know how a mom feels when the babysitter cancels! Anyway, they called back and told me someone (new) would be here about 10 am. Fortunately I have a very, very understanding boss and team! I was worried we would scare away the new caregiver when I gave her the situation but she said she would stay. I was so relieved to head to work. Tom and I get really stressed out with each other when his ammonia level is high. I also had to send the painter away today. We are both desperate to get the painting finished but there was no way for him to work around Tom since he needed to work in the kitchen and family room. It will have to wait.
I called about two hours later and Tom had not improved. I received a call about an hour after that and found out that the home health nurse had stopped by for her evaluation - Tom goes through this every time he is discharged. She did not draw blood but thought he was responding pretty well. She also told me the physical therapist had called Tom and he was planning to come by as well. Tom asked to talk to me and he did sound a bit better. It made me feel a little better that the nurse had seen him. I called the physical therapist to let him know that Tom was not quite himself today. He suggested postponing his visit but I thought Tom might be looking forward to the visit (company) so I told him to go ahead and come - I knew I would be home by then as well.
Tom did a really good job with physical therapy, I watched what they did and asked how often the exercises should be done. I told Tom we would do them together tomorrow. He's eaten some soup for dinner and is sleeping now. I am praying hard he will improve. It's been a really tough day physically, emotionally and spiritually. I'm thankful to be able to vent to my co-workers and family. Rest would be good but it's more important for his ammonia level to go down and rest and ammonia are like mixing oil and water.
I called about two hours later and Tom had not improved. I received a call about an hour after that and found out that the home health nurse had stopped by for her evaluation - Tom goes through this every time he is discharged. She did not draw blood but thought he was responding pretty well. She also told me the physical therapist had called Tom and he was planning to come by as well. Tom asked to talk to me and he did sound a bit better. It made me feel a little better that the nurse had seen him. I called the physical therapist to let him know that Tom was not quite himself today. He suggested postponing his visit but I thought Tom might be looking forward to the visit (company) so I told him to go ahead and come - I knew I would be home by then as well.
Tom did a really good job with physical therapy, I watched what they did and asked how often the exercises should be done. I told Tom we would do them together tomorrow. He's eaten some soup for dinner and is sleeping now. I am praying hard he will improve. It's been a really tough day physically, emotionally and spiritually. I'm thankful to be able to vent to my co-workers and family. Rest would be good but it's more important for his ammonia level to go down and rest and ammonia are like mixing oil and water.
Thursday, November 8, 2012
Tom is home!
We didn't see that coming!!
Tom called yesterday at 4 pm and told me he was being discharged! After a bit of scrambling, we agreed it would be best to have an ambulance bring him home as opposed to me trying to get him up the ramp in the dark and cold by myself. We were both a bit worried about how he would do with just me to help but things have gone pretty well so far. He is still in pain but is just going to have to work through it.
As God's perfect timing would have it, my afternoon opened up yesterday so I decided to take a half-day of vacation and get some errands run. Mostly it was so I could take the dogs to the vet for their shots and stuff and not have to sit and wait on the weekend. One hour: checkups, shots, and nail trims = $438.00! Then we (the dogs and I) took Tom's truck to get air in the tires, fill it up with gas and then picked up the tile for the kitchen backsplash. It was a very productive afternoon. I wasn't home 10 minutes when Tom called. I am so thankful to have been able to get all of that done. The dogs are SO HAPPY to have Tom at home!
After Tom called, I called Comfort Keepers immediately to arrange for someone to stay with him since I had quite a few work commitments this week. They were mostly able to accommodate my request so that worked out too.
As always, I ask that you continue to pray for Tom - that the pain will be tolerable and he will feel a sense of urgency to get moving and get stronger. I'd also like to ask you to pray for a couple of our friends: Melinda, a friend from Memphis who has been diagnosed with breast cancer and Amber, a friend from Georgia whose mother died Wednesday night after a difficult battle with cancer. No one is immune to life's struggles, praise God that He is with us every step of the way!
Tom called yesterday at 4 pm and told me he was being discharged! After a bit of scrambling, we agreed it would be best to have an ambulance bring him home as opposed to me trying to get him up the ramp in the dark and cold by myself. We were both a bit worried about how he would do with just me to help but things have gone pretty well so far. He is still in pain but is just going to have to work through it.
As God's perfect timing would have it, my afternoon opened up yesterday so I decided to take a half-day of vacation and get some errands run. Mostly it was so I could take the dogs to the vet for their shots and stuff and not have to sit and wait on the weekend. One hour: checkups, shots, and nail trims = $438.00! Then we (the dogs and I) took Tom's truck to get air in the tires, fill it up with gas and then picked up the tile for the kitchen backsplash. It was a very productive afternoon. I wasn't home 10 minutes when Tom called. I am so thankful to have been able to get all of that done. The dogs are SO HAPPY to have Tom at home!
After Tom called, I called Comfort Keepers immediately to arrange for someone to stay with him since I had quite a few work commitments this week. They were mostly able to accommodate my request so that worked out too.
As always, I ask that you continue to pray for Tom - that the pain will be tolerable and he will feel a sense of urgency to get moving and get stronger. I'd also like to ask you to pray for a couple of our friends: Melinda, a friend from Memphis who has been diagnosed with breast cancer and Amber, a friend from Georgia whose mother died Wednesday night after a difficult battle with cancer. No one is immune to life's struggles, praise God that He is with us every step of the way!
Monday, November 5, 2012
A NEW ROOM
Well, Tom is still in the hospital but in a new room. I guess this "isolation" room opened up and they wanted to move him here this morning. It is much nicer than the other one so I'm not complaining. He's always in "isolation" because of the staph infection he had 7 years ago. They are continuing to give him antibiotics - still don't really know what they are treating - I'm not sure they do either. Dr. Miller, the gastroenterologist stopped by today but nothing in his treatment was changed. I guess they are still trying to locate a bed in a skilled nursing facility. He was evaluated by Vanderbilt Stallworth today - that is an intense rehab place but I don't think they feel like he is ready. He walked pretty far down the hall today. I was hoping he would walk again tonight but I don't think that is going to happen. I guess if I could stay until 10 or 11 tonight he might go but I just can't stay that late.
He is much better overall today. He is more "awake" than he was this weekend. I'm sure that has to do with a lower ammonia level. I can't seem to get anyone to give me exact numbers - only things like "it's better".
Tom has been on the 4th floor this visit. He is usually on 6 or 7. They have closed the 7th floor because they don't have the patient load to keep it open. We have seen a lot of "our" nurses and techs working on this floor. Today they told the 7th floor staff they had 30 days to re-apply for open positions elsewhere in the hospital or they would be let go. I was surprised to learn that they actually apply for positions on certain floors. I would have thought they would just keep those with seniority or something. Our nurse today, who I really like, said most of the staff was encouraged because there are a lot of other positions open, it's just hard though because they will all split up. I guess it's sort of like my department - we are family! Please add the nurses and techs to your prayer list.
Today was a very productive day at work and I even got two things from my home "to do" list done - namely putting gas in the car and air in the tires. Some things just can't wait. It's a good feeling - especially for a Monday!! Tom's truck needs gas and air too so maybe I can knock those out tomorrow!
I really, really hope they can get him moved closer to home soon. He is doing well enough to go straight home except being able to stand up from a sitting position which is important. Hopefully a few days of work on that task and he can be home. He's just got to get out of here first!
Pray, too, for our country - especially tomorrow as we "begin" the Presidential election. I don't think it will be over tomorrow (or anytime soon).
XOXOXO
He is much better overall today. He is more "awake" than he was this weekend. I'm sure that has to do with a lower ammonia level. I can't seem to get anyone to give me exact numbers - only things like "it's better".
Tom has been on the 4th floor this visit. He is usually on 6 or 7. They have closed the 7th floor because they don't have the patient load to keep it open. We have seen a lot of "our" nurses and techs working on this floor. Today they told the 7th floor staff they had 30 days to re-apply for open positions elsewhere in the hospital or they would be let go. I was surprised to learn that they actually apply for positions on certain floors. I would have thought they would just keep those with seniority or something. Our nurse today, who I really like, said most of the staff was encouraged because there are a lot of other positions open, it's just hard though because they will all split up. I guess it's sort of like my department - we are family! Please add the nurses and techs to your prayer list.
Today was a very productive day at work and I even got two things from my home "to do" list done - namely putting gas in the car and air in the tires. Some things just can't wait. It's a good feeling - especially for a Monday!! Tom's truck needs gas and air too so maybe I can knock those out tomorrow!
I really, really hope they can get him moved closer to home soon. He is doing well enough to go straight home except being able to stand up from a sitting position which is important. Hopefully a few days of work on that task and he can be home. He's just got to get out of here first!
Pray, too, for our country - especially tomorrow as we "begin" the Presidential election. I don't think it will be over tomorrow (or anytime soon).
XOXOXO
Saturday, November 3, 2012
Still in the hospital
Tom is still in the hospital. I'm guessing it's because they haven't found an available bed in a skilled nursing facility. However, he is still receiving IV antibiotics and his ammonia level is back up to 125 (which is down from 134 two days ago). It was in the 40's four days ago - do not know what has caused it to jump back up. He does not feel good today but did get up and walk with the walker to the door and back. It didn't hurt him as much as he thought it would. I hope we can do it again tonight. His appetite has not been too great the past few days. He does not seem to be disoriented or confused but he is agitated. They backed down on the ammonia medicine a day or two ago, I don't know if they've increased it again or not. Don't see the nurses and techs much when I'm here.
Before they started the antibiotic today, they had to draw blood to test the vanc level. The lab tech said they would be drawing blood again while the IV was running and then again at the end. I am not happy that they have to stick Tom 3 times, of course, neither is he! The nurse wonders why he is irritated!!!
Got a few things done at home today, laundry, bills and watering the yard. They planted some grass when the removed the berms on Monday. I'm supposed to be keeping the straw wet. I have the sprinkler on a timer and I try to move it around every night to get full coverage. I also got to go to kick-box class this morning, I'm feeling that tonight but I love it!
I'm looking forward to the extra hour of sleep tonight - it is the only good part of "fall back".
Before they started the antibiotic today, they had to draw blood to test the vanc level. The lab tech said they would be drawing blood again while the IV was running and then again at the end. I am not happy that they have to stick Tom 3 times, of course, neither is he! The nurse wonders why he is irritated!!!
Got a few things done at home today, laundry, bills and watering the yard. They planted some grass when the removed the berms on Monday. I'm supposed to be keeping the straw wet. I have the sprinkler on a timer and I try to move it around every night to get full coverage. I also got to go to kick-box class this morning, I'm feeling that tonight but I love it!
I'm looking forward to the extra hour of sleep tonight - it is the only good part of "fall back".
Wednesday, October 31, 2012
Much better today
Tom's ammonia level is down so that alone makes today so much better. He is still in a lot of pain and they are giving him what they can but he's going to have to work through it. He is not strong enough to move to an intensive rehab facility so he will probably go to a skilled nursing facility for a while until he can get stronger. Hopefully that will happen in the next day or so and he will get to move some place close to home. I told the social worker he could not go back to the place he was this summer!
He's pretty sleepy tonight. I'm trying to get him to wake up to eat and then do some of the exercises he did with physical therapy.
My neighbors, Bob and Gail, are taking such good care of the dogs by letting them out to run around during the day. Yesterday I got home to find homemade cupcakes. They are so yummy! We are so blessed!
Hope everyone has a safe Halloween!
He's pretty sleepy tonight. I'm trying to get him to wake up to eat and then do some of the exercises he did with physical therapy.
My neighbors, Bob and Gail, are taking such good care of the dogs by letting them out to run around during the day. Yesterday I got home to find homemade cupcakes. They are so yummy! We are so blessed!
Hope everyone has a safe Halloween!
Monday, October 29, 2012
Sometimes . . .
I just want to scream!
Tom still seemed "out of it" to me today. He is getting the same dose of pain medicine that he gets at home but he is able to take it more often. He has refused to take it a couple of times because his pain was not bad enough at the time - good for him!
His ammonia level is up to 145 today, no explanation. That certainly had a lot to do with the lethargy. When he talks, he makes sense but I do question what he is telling me. For instance, he told me that today he walked without a walker. I didn't believe him. So, he got up to the side of the bed, asked me to raise it some, stood up, grabbed my had and walked forward about 5 steps and then backed up to the bed!!!!! I am so proud of him. A slap in my face for not believing him. Dr. Rutland did not come by while I was here this morning. Tom told me later that Dr. Rutland wanted to try to send him home tomorrow. When I got here this afternoon, Tom did not look comfortable (I kinda had a feeling this tech was not going to be that good). After he walked, he stood up again so that I could change the wet (from fluid) sheets and his gown. I noticed that his lower leg was red and warm (cellulitis) so I called for the nurse. She gets points for coming in to see it and then calling Dr. Rutland. He came back over this evening to look for himself. This gave me a chance to talk to him about extra physical that for Tom (even if I have to pay for it myself). He gave his blessing with gusto. He asked me if social work had talked to me, I said no. Apparently they are trying to get Tom into a more intense rehab place - hallelujah! I jumped on that. I really do want Tom to come home but he needs more intense therapy for a while - whether it's inpatient or outpatient. I'm not sure Tom was really getting the whole conversation. I did tell Dr. Rutland about the walking and even he was surprised. So, prayers that Tom can get some time in an intense rehab. I'm still going to pursue extra therapy at home though.
Tomorrow I will call off the UAB visit. Maybe we can reschedule for next month.
Still concerned about the ammonia and cellulitis but at least they are monitoring it.
Tom still seemed "out of it" to me today. He is getting the same dose of pain medicine that he gets at home but he is able to take it more often. He has refused to take it a couple of times because his pain was not bad enough at the time - good for him!
His ammonia level is up to 145 today, no explanation. That certainly had a lot to do with the lethargy. When he talks, he makes sense but I do question what he is telling me. For instance, he told me that today he walked without a walker. I didn't believe him. So, he got up to the side of the bed, asked me to raise it some, stood up, grabbed my had and walked forward about 5 steps and then backed up to the bed!!!!! I am so proud of him. A slap in my face for not believing him. Dr. Rutland did not come by while I was here this morning. Tom told me later that Dr. Rutland wanted to try to send him home tomorrow. When I got here this afternoon, Tom did not look comfortable (I kinda had a feeling this tech was not going to be that good). After he walked, he stood up again so that I could change the wet (from fluid) sheets and his gown. I noticed that his lower leg was red and warm (cellulitis) so I called for the nurse. She gets points for coming in to see it and then calling Dr. Rutland. He came back over this evening to look for himself. This gave me a chance to talk to him about extra physical that for Tom (even if I have to pay for it myself). He gave his blessing with gusto. He asked me if social work had talked to me, I said no. Apparently they are trying to get Tom into a more intense rehab place - hallelujah! I jumped on that. I really do want Tom to come home but he needs more intense therapy for a while - whether it's inpatient or outpatient. I'm not sure Tom was really getting the whole conversation. I did tell Dr. Rutland about the walking and even he was surprised. So, prayers that Tom can get some time in an intense rehab. I'm still going to pursue extra therapy at home though.
Tomorrow I will call off the UAB visit. Maybe we can reschedule for next month.
Still concerned about the ammonia and cellulitis but at least they are monitoring it.
Sunday, October 28, 2012
Better?
It's kind of difficult to tell if Tom is better today. He's been sleeping most of the time I have been here. I am thinking (hoping) it is the extra pain medicine and not his ammonia level. He seems to know what is going on but still gets confused about some things. Dr. Richards ordered physical therapy for him today and he sat on the side of the bed. It didn't seem to hurt him as bad as I thought it would. It will be interesting to see what Dr. Rutland says tomorrow. If his ammonia level is down there might not be any "medical" reason for him to stay but if he cannot get up, he still won't be able to go home. I really don't want him to have to go to rehab for one hour of physical therapy a day. I probably just need to quit worrying about something that hasn't happened yet, huh?
We were blessed with a visit from Bob Gaskill, a member of my Sunday School class. He and his wife Emily have been so good to us, as have all the members of my class. Tom didn't participate much in the conversation but he was listening with his eyes closed :-)
Praying that Tom will have a pain-free day tomorrow!
We were blessed with a visit from Bob Gaskill, a member of my Sunday School class. He and his wife Emily have been so good to us, as have all the members of my class. Tom didn't participate much in the conversation but he was listening with his eyes closed :-)
Praying that Tom will have a pain-free day tomorrow!
Saturday, October 27, 2012
Severe back pain
Well, things were humming along and even though Tom's ammonia level rose to 140 this week, that was coming down - we were so happy to be able to deal with that at home. It was tough, but we were getting somewhere. This morning, however, Tom was having a lot of back pain and it got to the point whe he couldn't even stand with assistance from his lift chair. After trying for quite a while, we both agreed he needed to go to the hospital. So, a trip to the ER and Tom will be in the hospital for a few days. X-rays don't show anything other than some degeneration and previous compression fractures. Dr. Richards seems to think it is more muscle pain. Because of the condition of his liver and his elevated ammonia level, they cannot really give him any "good" pain medicine. Since he cannot get up and down, home is not a good place for him right now.
His ammonia level is down to 99 but he is still experiencing some disorientation. So they will work on getting that back to normal. All of his other blood tests are normal (for Tom and his condition) so we are thankful for that. I don't know what they can and will do for his back, I'm sure physical therapy will be involved. I'm going to start looking for a more intense option for Tom's physical therapy. Hopefully I can get him to buy into that as well. He needs to be moving more and getting stronger. The two days a week he gets now is not enough. If anyone has any ideas, please send me an email at burnetj@bellsouth.net.
Yesterday was probably the roughest day we've had in a while. I was stressed on several levels so started the pity party routine. It didn't exactly help that my three devotions for yesterday all talked about being thankful for suffering.and being joyful. I struggled with that all night. Praise God, for the mercy he showed us today. Tom was improving from a confusion standpoint, he calmly agreed to go to the hospital, I have help caring for Tom from the doctors and nurses, I will get some sleep ,tonight, ill get to go to church tomorrow and serve my shift as an Andrew Minister and for the greatest joy, my neighbor greeted me at the door this morning with encouraging words and a bouquet of sunflowers! It's still a challenge to be thankful for suffering.
Tm is supposed to go to UAB on Wednesday. I kinda doubt we are going to make that appointment.
Again, we covet your prayers.
His ammonia level is down to 99 but he is still experiencing some disorientation. So they will work on getting that back to normal. All of his other blood tests are normal (for Tom and his condition) so we are thankful for that. I don't know what they can and will do for his back, I'm sure physical therapy will be involved. I'm going to start looking for a more intense option for Tom's physical therapy. Hopefully I can get him to buy into that as well. He needs to be moving more and getting stronger. The two days a week he gets now is not enough. If anyone has any ideas, please send me an email at burnetj@bellsouth.net.
Yesterday was probably the roughest day we've had in a while. I was stressed on several levels so started the pity party routine. It didn't exactly help that my three devotions for yesterday all talked about being thankful for suffering.and being joyful. I struggled with that all night. Praise God, for the mercy he showed us today. Tom was improving from a confusion standpoint, he calmly agreed to go to the hospital, I have help caring for Tom from the doctors and nurses, I will get some sleep ,tonight, ill get to go to church tomorrow and serve my shift as an Andrew Minister and for the greatest joy, my neighbor greeted me at the door this morning with encouraging words and a bouquet of sunflowers! It's still a challenge to be thankful for suffering.
Tm is supposed to go to UAB on Wednesday. I kinda doubt we are going to make that appointment.
Again, we covet your prayers.
Thursday, October 18, 2012
Tim's field trip . . .
. . . To the hospital.
Tom fell at home this morning. I'm not too sure what happened, I think he basically lost his balance. He was near the fireplace so he ended up with a lot of scrapes. Thankfully the Guardian unit was in place so he was able to use it. The dispatcher sent the paramedics and then called me. They told me he was ok and they had called for lift assistance. When the fire department got to the house, they saw a lot of blood and felt it would be best to take Tom to the hospital. The paramedic called me from the house and we agreed to meet at the hospital.
When Tom got there he looked a lot better than I thought. He was complaining about his ribs so the doc looked him over, determined he wouldn't need any stitches but ordered X-rays. Tom was worried about the dogs and the mess so he asked me to go home and "clean up". I wasn't sure what to expect. The paramedic told me at the hospital that the fire department had used some towels to clean up and put them in the trash. I think I want to hire the fire department to clean my house. There wasn't a drop of blood anywhere! I put the towels in the wash and mopped the floor just in case. The dogs were fine.
I called the hospital and was told the X-rays had been done but not read. I figured that would take some time so I headed to the office to get a few things and then planned to go back to the hospital. The doc had suggested they call an ambulance to take Tom home but I took the truck in case that didn't work out. I didn't even get out of the neighborhood before the hospital called back and told me to stay put. They were discharging Tom and called for an ambulance to bring him home. (I would have never been able to get him in the house by myself.)
Tom is home and in quite a bit of pain. He cannot take any strong pain reliever so it's going to be even more rough the next week or two. I'm not sure how we will manage tonight. Comfort Keepers is going to send someone for part of the day tomorrow so I'll either stay and help or head to the office for a few hours.
Praise The Lord he was not seriously hurt.
Tom fell at home this morning. I'm not too sure what happened, I think he basically lost his balance. He was near the fireplace so he ended up with a lot of scrapes. Thankfully the Guardian unit was in place so he was able to use it. The dispatcher sent the paramedics and then called me. They told me he was ok and they had called for lift assistance. When the fire department got to the house, they saw a lot of blood and felt it would be best to take Tom to the hospital. The paramedic called me from the house and we agreed to meet at the hospital.
When Tom got there he looked a lot better than I thought. He was complaining about his ribs so the doc looked him over, determined he wouldn't need any stitches but ordered X-rays. Tom was worried about the dogs and the mess so he asked me to go home and "clean up". I wasn't sure what to expect. The paramedic told me at the hospital that the fire department had used some towels to clean up and put them in the trash. I think I want to hire the fire department to clean my house. There wasn't a drop of blood anywhere! I put the towels in the wash and mopped the floor just in case. The dogs were fine.
I called the hospital and was told the X-rays had been done but not read. I figured that would take some time so I headed to the office to get a few things and then planned to go back to the hospital. The doc had suggested they call an ambulance to take Tom home but I took the truck in case that didn't work out. I didn't even get out of the neighborhood before the hospital called back and told me to stay put. They were discharging Tom and called for an ambulance to bring him home. (I would have never been able to get him in the house by myself.)
Tom is home and in quite a bit of pain. He cannot take any strong pain reliever so it's going to be even more rough the next week or two. I'm not sure how we will manage tonight. Comfort Keepers is going to send someone for part of the day tomorrow so I'll either stay and help or head to the office for a few hours.
Praise The Lord he was not seriously hurt.
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