SLOW PROGRESS

It seemed to me that Tom was getting a little more lethargic when I was visiting at noon but he rebounded this evening.  He had physical therapy right before I got there so maybe that was part of it.  We even went for a walk this evening before dinner.

A huge thank you to my friend Ellen who drove all the way across town yesterday to feed the pups and then visited with Tom while I went to church to serve for Room In The Inn.  Ellen, Tom and I worked together for many years.

I talked to Dr. Rutland this afternoon about Tom's progress.  We discussed Tom's ammonia level and what he told me was that Tom received one dose of the ammonia medicine on Sunday but didn't receive any more until Dr. Rutland ordered it on Monday.  Even though I was told on Sunday that the on-call doc ordered that all of the meds Tom was taking at home be continued.  I am really, really disappointed in the communication about the meds thus far.  Tom probably could have been home by now.  Dr. Rutland said yesterday was probably the worst day as far as the blood count readings go and they weren't even that bad.  He said he would print them out and send them to UAB.  I don't know if they will make any difference but I'd like to try.

Tom's red blood cell count is borderline so if it's lower in the morning, Dr. Rutland will probably order some blood.  I doubt Tom will go home tomorrow but we're praying for Friday.  Dr. Rutland seems more concerned about Tom's physical strength and being able to get around at home.  He moves really well, just not really fast.  I thought he did great this evening.

I think I mentioned that he doesn't seem to have fluid retention issues any more.  His arms and legs are so skinny!  I told him he needs to really build some muscle now.

The Internet access at the hospital is not very good (except maybe in the wee hours of the morning) so the updates will be sporatic.  Please keep checking and praying!

Thanks

AMMONIA LEVEL DOWN TO 120

Well, Tom is better but his ammonia level is still too high for the doctor to let him go home.  I know you've probably been checking for updates but I've been busy - and this one is just a quick update.

Physical Therapy walked with Tom all around the floor yesterday and Tom is alert and communicating well.  His dexterity is slow but I think as the ammonia level continues to fall, it will get better.  He pretty much as no excess fluid which is great.  He is eating well which he needs to do too.  He's just upset that he can't go home - me too!

Provided there is Internet access, I'll send a longer post later.

Good news/bad news

Poor Tom, I practically force fed him tonight - but, he ate his entire dinner: meatloaf, Mac and cheese, turnip greens and grapes! I think he will be a lot better in the morning.

Tom's new MELD score is 12. That's down a point from last time which is not good news in terms of list placement but it means he's stable, which kind of doesn't mean a whole lot in our present situation. I think the ammonia spikes are related to the lack of full liver function but it's not a big factor in the calculation. I can only guess it's because our ammonia level goes up and down all the time (probably not this high though). Anyway, something else to discuss with the docs at UAB. I wish I had a better explanation because I get asked all the time why he's not higher on the list when he's in the hospital all the time.

I wish he could have been more alert to watch the Daytona 500 tonight. I told him he was going to have to wake up and remember who wins so he can tell me in the morning.

Well, dogs are fighting for my attention so I better give them some so I can go to bed.

Please keep praying!!

YIKES - Ammonia level now 206

OK, so, here is the "Dr. Wife's" take on things . . . finishing the antibiotic was the factor that caused his ammonia level to spike, it was getting back under control yesterday with the additional doses of ammonia medicine.  Then, they gave him a dose of the same antibiotic yesterday morning (it was on the list of meds that I gave the ER docs but I had not noted that he had finished the full dosage - which means it's my fault - again).  I asked them yesterday if they had given it to him, they said yes, I asked them at that time to please hold the antibiotic until Dr. Rutland came back to make the call on whether Tom needed it or not.  So again, it was stopped. 

I was a bit concerned that the cellulitis might be coming back because Tom's leg looked a little red to me.  When I asked Dr. Rutland about it this morning, he thought the leg still looked fine and said Tom didn't need the antibiotic.  So I think this is a compound reaction to stopping the med. 

Everything else still looks pretty good.  If they have a full set of labs, I'm going to ask Dr. Rutland to send them to UAB.  Tom was sound asleep most of my lunch visit.  His meal arrived but I could not stay to wake him up and feed it to him.  His nurse said they would check on him at 2, wake him up and make him eat.

I know it's just going to take time to process the food and ammonia medicine and Tom will be himself again.  So, pray that those things happen quickly.

Tom realized he was confused again and it really bothered him.  I told him not to worry, it would be better soon.

More later.

Moving to regular room

Which means he's not going home today. Tom is more groggy today, don't know why. His dexterity is not great either. His blood sugar was high so they gave him some insulin. Dr. Rutland came by and is ordering some physical therapy which will be good and has stopped the antibiotic too. Everything else seems to still be good.

The lab just arrived for full blood count and ammonia level so maybe that will tell us something. I'll provide another update when I come back this afternoon.

So much better

Tom is doing so much better this afternoon. His friend Dennis came by and they had a nice visit. The visits have helped Tom improve more than anything else. He has not been out of bed yet. They did move him to another "room" inside ICU. Apparently the isolation room (cube) he was in was needed for another patient. I still don't know why he's in ICU. They are very busy and short-handed here. They don't want guests to be here between 6 and 8 AM and PM so I'll probably need to leave soon. Tom just received his first meal in 24 hours so that should make him feel better also.

Dr. Rutland should come by tomorrow. I really hope Tom will be able to go home. His red blood count was 30 so he will not need any blood. We're very thankful for that. If they will let him get up and move around, that will help too. I don't think anyone wants to make that decision so we may have to wait for Dr. Rutland to make that call.

My diagnosis is a post-antibiotic jump in his ammonia level. I don't know why that happens. This is the second time it's happened so I think we have a pattern. It's something we will need to prepare for in the future.

Thanks for checking the blog and praying for us. It's been a rough 24 hours but I think the worst is behind us.

I'll post when I get an update tomorrow.

Ammonia level up

Well, a high ammonia level is the reason Tom is currently occupying a bed in the ICU. He was not feeling well yesterday and was beginning to get confused. I gave him an extra dose of medicine for that but it got to a point that he could not move safely on his own and I was unable to help him by myself. I called to have an ambulance transport him to the hospital. He is much better this morning. It usually doesn't take too long but that 8-12 hours can be a lifetime. Anyway, I was worried that it could be something else too. All of his vitals are great. Besides the ammonia level, they are watching his red blood cell count. If it is not higher by 4 pm, they will give him some blood. His friend Dave came by earlier and that did wonders for him. He doesn't remember much about yesterday evening or last night. He slept most of it which was good for everyone.

I'm hoping and praying for a quick release. I think if they have an available bed he will be moved out of ICU this afternoon. In the meantime, I like the extra attention he gets here.

Will post an update tonight.

ON THE MOVE

Tom continues to get better.  He had a doctors appointment on Tuesday for a follow-up on the cellulitis and it is much better.  He finished this round of antibiotics on Wednesday so we'll keep an eye on his leg to make sure it doesn't come back.

Tom and I celebrated Valentines Day with dinner last Friday night.  We went to Sperry's and Tom did NOT use his walker!  It was wonderful.  He's still moving slow but getting stronger every day.  He had therapy yesterday and was walking around the house last night without the cane!

I want to brag on more of our wonderful neighbors . . . a couple of weeks ago I was trying to unload a new media stand by myself.  Our neighbor behind us saw me struggling and came over to help me get it unloaded and into the house.  It was much heavier than I thought it would be.  Our old media stand did not even make it out of the door in one piece (translation:  cheap piece of furniture)!  Last Sunday as I was pulling in from church, I noticed another neighbor had left a beautiful bouquet of flowers and sweet note on the porch.  They are still so colorful!  I can't say enough how blessed we are!

Tom's blood work for a new MELD score was due yesterday.  I called to verify that they had received the results but they did not have it calculated yet so I guess we will have to wait to receive the letter with the new score.  Tom is doing so well and getting so much stronger, I wouldn't mind if it stayed low for just a little while longer, but then again, I wouldn't mind if it rose just a little.  Honestly, I just don't know what to pray for these days.  I keep thinking that maybe his liver will regenerate and a transplant won't be necessary, but I know more of these lingering issues would be solved with a completely healthy liver.  I do wish they could give us a timeframe.  Tom goes back to UAB in March so we'll see what they say at that time.

Tom likes to go out for breakfast these days so we try to do that at least one day on the weekend.  He's been meeting some friends for lunch and going to the grocery store.  The best part is - he drives himself to his doctors appointments and I can just meet him there!  It saves 2 hours of my day!  Of course, those doctors appointments are not as frequent as they used to be which is great!

Well, I don't know about you all, but I am ready for Spring!  We had a beautiful, but windy, day in Nashville yesterday.  The puppies loved being outside.  Hopefully we'll have many more of those days soon.

Tom still needs to get a lot stronger so I ask that you pray for him to push himself during therapy and on his own.

Happy Valentines Day

I hope you're all having a wonderful Valentines Day. Ours has been quite nice . . . considering.

Tom was complaining yesterday about a sore ankle. He thought he twisted it but couldn't remember when or where. I have tried to be "hands-off" as much as possible so I didn't ask a lot of questions. I did notice that it was a little red and mentioned it to him. This morning he said it was better but when we looked at it, his lower leg was beet red. I think it even surprised him. I asked him if he would at least call Dr. Rutland and see if he could get it looked at today. When I was leaving for work, he asked me to try to call also since he has such a hard time getting through. I w calling the doctors office at 8 am and got him an appointment to see a physicians assistant at 11:00 am. Tom met me there and he was diagnosed with cellulitis (again). The PA gave him a prescription for an oral antibiotic. They sent it electronically to the pharmacy and before I was out of the parking garage, I received a text that it was ready to pick up! Tom will be on it for 10 days so we're praying that it will fix the problem and Tom will not need to be hospitalized for IV antibiotics.

Tom has an appointment to go back to Dr. Rutland on Tuesday for follow-up. He will also have the blood work done to be sent to the Liver Center.

After the doctors appointment, Tom and I took the opportunity to go out to lunch together. Since I wanted to go to the Y this evening, it gave us a chance to spend a little extra time together on Valentines Day. We typically go out on another evening anyway to avoid the crowds and being rushed through dinner.

That's all the update I have for now.

Blessings

PRETTY GOOD NEWS

Tom had two doctors appointments yesterday - with his kidney doctor and his PCP.  Both said he was doing well and they were pleased with his progress.  Tom continues to lose fluid slowly.  I decided that if I had a pump that when I used it the scale would show a smaller number . . . I'd be pumping it all day long, every day!  Anyway, Tom says it is a bit uncomfortable but he's doing what he needs to be doing so that's good.

They are still trying to regulate things like potassium, magnesium and phosphorus.  Tom is taking supplements for all three.  Both doctors didn't request another visit for two months but he needs to go back next week to get bloodwork done for the MELD score and he will need to go back the following week to get the potassium, magnesium and phosphorus re-checked (he doesn't know about that yet).  I am happy he is getting his blood checked so often because I like staying on top of things that seem to only show up in the bloodwork, I know he doesn't like it.

Tom actually drove himself to his appointments yesterday and I met him there.  I really like that program a lot!  He even met some of his buddies for lunch beforehand.  He still needs to be taking it easy but I am so glad he's getting up and around.  There are only so many things he can do (right now) around the house and I know if he gets out, he pushes himself more.

He is getting a physical therapy evaluation this week to see how much progress he's made recently and he will get also some direction to help moving forward. 

Both doctors asked if we had any timeframe on when Tom would be getting a transplant.  That is the big question.  I wish we knew!  Unfortunately no one knows.  Everyone is different so we'll just have to wait and see.  Tom goes back to UAB next month.  If his MELD score stays as low as it is now, it won't need to be checked again until May so that is good but also not good.  At least Tom is feeling better and we both need that for a while!

We thank you for continuing to keep us in your prayers. 

Post surgery follow up

Tom had his follow up appointment at UAB today. Dr. Eckhoff thought Tom was doing well. He removed the bandages and then marked the location of the pump on Tom with red Sharpie! The blood tests showed that Tom's white blood cell count is high which would indicate infection but there appears to be no infection at the incision sites. His potassium is still a little low too. I will call Dr. Rutland tomorrow and share this information with him and see what he thinks Tom should do. Tom did not have a temperature so it's unsettling what the infection could be. At the doctors suggestion, Tom is getting an extra potassium pill tonight.

I think they are going to submit the blood test results to the Liver Center to check the MELD score.

I'm still bothered by the amount of fluid in his abdomen but we'll see what happens in the next couple of weeks. Tom does not go back to UAB until March.

It was a long trip down in the pouring rain but at least it wasn't freezing cold. Tom slept most of the trip down and back.

Please pray that this white cell count thing is easily fixed with no hospital stay required. Tom may refuse to go.