Sunday, December 23, 2012

Arrangements for Tom

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

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.

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.

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.

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!

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. 

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.

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!

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.

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.

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!

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.

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.

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).

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.

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.

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. 

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. 

Thursday, December 13, 2012

Sorry

I touched edit so the most recent post is an older one!

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.