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.
Saturday, December 22, 2012
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.
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