FOLLOW-UP APPOINTMENT

Tom had an appointment with Dr. Rutland yesterday.  They drew blood but we don't know the test results yet.  Tom has gained some weight (fluid) since leaving UAB so he will be back on lasix to see if that will get it back under control.  Of course we really don't know if the shunt/pump is working either.  I told him to pump the pump because that was what he was supposed to do when he got excess fluid.  He told me he "knows what to do" so I left it at that.

Today is the last day he is on an antibiotic so we'll watch to see if anything changes.  It's like walking on egg shells to ask him anything about his health.  Tom's mood and attitude have not been the best this past week - I am so over it. 

We asked Dr. Rutland about a referral to Vanderbilt Gastroenterology (which the Blue Cross case manager and I discussed last week).  Vanderbilt only accepts doctor to doctor referrals so I was unable to make an appointment on my own.  Dr. Rutland's response was to have the case manager call him - he was not going to go through "that" again.  He is clearly still upset with Vanderbilt over not accepting Tom for a transplant evaluation in the first place and doesn't like the way they handled it at all.  I asked him if it would be better that if Tom had to go back to the hospital, I just have him taken to Vanderbilt.  Dr. Rutland's response was "we can take care of him at Baptist".  Tom was OK with his responses so I guess we keep doing what we've been doing.

I asked Dr. Rutland what I should do if Tom continues to gain weight, he said to come in and see him.  I have created a chart again for Tom to track his weight.  I think it helps for him to see it.  Dr. Rutland actually thought he looked better and not so gaunt.  He's looked flushed to me so I'm worried about a fever.  I can't imagine with all of the antibiotics he had at UAB that he would have any kind of infection.  I just need to be patient and see what the blood tests show.  Dr. Rutland seemed more concerned about the potassium level.

At least Tom has been alert and "with it".  The extra weight is making it more of a challenge for him to get around - he's not driving right now.

I'm still praying that Tom will be fortunate enough to get a liver while his MELD score is higher.

ONE YEAR AGO TODAY

It was one year ago today that Tom went to the hospital and I heard dreadful words that he might not survive.  With all of the hospital stays we've had since then, a total of 142 days, it seems surreal that he is in the hospital today - but . . . HE'S GOING HOME!

Tom was up early this morning because he couldn't sleep.  He decided he was going to go get some coffee up at the nurses station.  He didn't want help from me at all (he has a bit of attitude this morning).  He shaved, brushed his hair & teeth, put on his robe and took off down the hall.  I went ahead and took a shower - he was back with his coffee when I got out.  Shortly after that, Dr. Roth came in and asked him if he was ready to go home.  Of course, the answer was yes!  They have removed his catheter and are giving him an IV dose of magnesium over the next two hours.  We will meet with the team during rounds to go over medication changes and stuff.  I think the plan is to be discharged by 1 pm.  Tom will need to go and see Dr. Rutland this week so I'll work on that Monday.  I'll also work on getting him an appointment with a gastroenterologist at Vanderbilt.  I'm sure it will be 30-60 days before he can see a doctor there.

They've given him 3 doses of potassium in the last 24 hours.  It's strange that he needs so much since 6 days ago, his potassium was so high!  The doctors are convinced he was dehydrated and that was the primary cause of all of the problems.  He has not been on lasix this week so we'll see if they decide to continue that going forward.  I'm sure it is something we will need to watch.  That is the biggest challenge for me.  Tom and I usually do not agree on when he needs to take more or less of a medication. 

I can't even begin to give enough thank-you's to our family, friends and so many folks we've never met for their prayers and support this past year.  I so wish Tom had a new liver.  However, we are sitting at our best opportunity for a transplant thus far so I ask you to pray that he can get one before his MELD score drops again.  I know the problems don't go away once he gets a liver but I'm counting on the new set of problems to not be as difficult.  Tom couldn't have survived without the wonderful doctors and nurses he's had taking care of him and I could not have survived without you all.  I know I can't handle another year of this but I would never have thought I could have handled this past 12 months either.  So, we continue to take it one day at a time and enjoy God's blessings.

A SHOWER AND A WALK

The afternoon has been pretty calm.  Tom took a shower and went for a long walk - I was very impressed with how far he walked.  He feels so much better.  The docs have discontinued all IV meds so it will be nice to look forward to a night without the IV pump going off every 10 minutes (or less) like it did last night!

Dr. Weber mentioned this morning that Tom might get to go home today - I thought that was pushing it a little but maybe if all goes well, he can be out of here tomorrow!

There is not much more to report.  We're both hoping for some good sleep tonight.

A BETTER DAY

Tom is doing well this morning.  He's feeling good and ate a nice breakfast.  His kidneys are back to normal so that is a good thing.  They are continuing to give him IV fluids and albumin.  The doctor really thinks Tom was dehydrated since there has been no infection.  His temperature is normal, I don't have an update on his heart rate yet.  They brought in some potassium for him to take.  It's something Tom normally takes but they haven't been giving it to him since it was so high on Monday.  The ammonia medicine tends to take the potassium out of his system.

I think we will be getting a lot more info when we go home this time about managing his care and what meds he can take more of if this or that starts to happen.  Of course, we'll also stay in close touch with his doctors in Nashville and I have said all along, I think he needs his blood checked more frequently so maybe we can put a plan in place for that.

He will be able to hold the MELD score of 22 for 30 days so maybe good things will happen for him in that time frame.  Tom is anxious to get out of bed and the doctors are encouraging it so hopefully we can go for a walk shortly.  With some luck, Tom will get to go home on Sunday. 

2-3 MORE DAYS

It appears Tom will be here 2-3 more days.  They are giving him one last dose of antibiotic tonight and then will stop it.  They've found no infection source and think he is just dehydrated.  They are giving him IV fluids now.  His temp was 99.6 at last check and his BP is good.  His heart rate continues to be high - probably due to the dehydration.  I'm wondering if the antibiotics might be upsetting the kidneys.  Of course, dehydration would definitely do that.  His output is not nearly what it was but he's not on lasix either.

They gave him some Benedryl before starting the antibiotic so he's been sleeping most of the afternoon.  I tried to take a nap but the nurse, tech and doctor came in so I gave up. 

I had hoped we would go home tomorrow or Saturday so will probably need to find a laundry source tomorrow.  I have enough clothing until Saturday but if he's still here after that (likely), I'll have to figure out a new plan.  I know he won't want to wait while I work all day and then come down to get him Monday - and I won't be able to handle the six hours of driving Monday night anyway.  It will work out somehow - I'm not gonig to worry about it - besides, I'm still praying for a miracle.

I got really restless this afternoon - Tom kept dozing off but his IV pump kept clogging so I kind of needed to stay in the room so I could call the nurse and have her come and fix it.  Otherwise, they will let it beep forever.  After about 12 IV pump jams, I went for a walk.  It's been raining here and is much cooler than yesterday.  I ended up outside in the rain for about 2 blocks trying to find a way back in that wasn't a loading zone.  It was good to get outside though. 

Speaking of pumps, we found out today that Tom doesn't have to pump the shunt - unless he has excess fluid so that is such a relief!  It must be working because they were unable to find any fluid in his abdomen during the ultrasound this morning so they could pull any to test. 

Tom has just finished a good dinner and it appears the Benedryl has worn off - he's much more alert.  His temp is down some more so maybe everything is heading back to the "normal" as we now know it. 

We're hoping to get some sleep tonight but if not, you can bet I'll be spending the time awake praying for a liver transplant - soon!

GOOD NEWS - SORTA

Well, Dr. Roth came in this morning and said that Tom's kidneys were not doing as well today (although his output is excellent).  I asked him to please pull the numbers and send them over to have the MELD score re-calculated and now he's a 22!  That actually puts him 9th on the list for his blood type here!  He will be at that score (but not necessarily that position) for 30 days.  If he can get just one more point, he would be 5th on the list and that would give us a pretty good chance of getting a liver.  Would it be bad to ask the docs to do or not do something so that we could get ONE MORE POINT???

Anyway, wow how fast things can change if you get the right test results sent at the right time.  Tom is still running a slight temperature and feels warmer today than yesterday.  The docs still don't know an infection source.  He had an abdomen ultrasound this morning and are going to try to draw some fluid off for testing.  Tom said the radiology tech didn't find any fluid so I guess we wait to see what the docs say about that.  He was given albumin last night - presumably to help with the slight swelling in his legs and feet.  Dr. Roth said he might be a bit dehydrated which could explain the kidney issue.  They just hung an antibiotic and will give him more after the antibiotic runs.

Tom had allergic reactions to 2 antibiotics when he first got sick so these, along with his childhood penicillin allergy, have severly limited what they can give him.  With counsel from the hospital pharmacists, we have re-tried the 2 antibiotics and Tom has not had the same type of reaction.  These antibiotics are the best for treating what the docs think he may have and are broad-spectrum too.  So, if Tom continues to do OK, it will serve him well to know that he can take them in the future. 

Tom is more alert today than yesterday but not as well as Tuesday - he just feels achy.  He did get up and move to the stretcher for the ultrasound and then back to the bed so that was good.  He's not been on his feet since Monday so he got a little dizzy. 

OK, so I'm praying for at least one more point (2 or 3 would get him to the top of the list).  Since we're here, I'm ready for him to just get a liver.  I've been praying for a miracle so I'll keep doing that too. 

UAB - DAY 3

We are still here!  I left to go home yesterday about 4:30 and arrived back here at 9:15 this morning.  It was nice to be home and get some sleep, see the puppies and get my toothbrush (not to mention do some laundry, wash the dishes, go through the mail, clean up a little)!  When I got home, I called Tom.  He told me he had a slight fever.  This morning, his fever was higher, his BP low, and heart rate high; clearly he wasn't feeling well.  He was not confused, but tired - almost flu-like. 

He's received 2 different antibiotics so far today and will receive a third one shortly.  The docs feel like he has an infection but they don't yet know what/where.  Tom was admitted on the "medical" team so the "liver" team had only been consulting.  He has been moved to the "liver" team now and there is a lot more activity.  He has had a thorough evaluation - including looking at the shunt/pump.  I think/hope we'll get more answers and Tom will start to feel better. We were just told the transplant surgeons will come in tomorrow and evaluate the shunt/pump.  I'm praying all will turn out well with it.  I don't want to have to deal with the fluid retention again - I know Tom sure doesn't!  The liver team has residents on this floor 24-hours a day so if we need anything at all, they are right here!  They can only support a certain number of patients too so they are more focused. 

They are adjusting some of Tom's other meds tonight too. 

I managed to leave my iPad and charger at home.  Fortunately I have my PC so I can do some work.  It's new to me so maybe I'll have some time to "break it in" and get used to it.  It always takes me a while to get it set up the way I like it.

The best surprise of the day was a visit from Tom's sister, Cathy!  She arrived about 10 minutes after I did and stayed the entire day.  It was so nice to have the company and the help.  I know Tom was really happy to see her and have her here.  He cherishes visits from his friends and family more than he ever has.

My prayers continue for a liver transplant soon.   For tonight, specifically, it will be that the shunt/pump issue is resolved and these new medicines help Tom feel better.

Still at UAB

I think I might have mentioned that Tom had been really sleepy the past few days. I figured something was not quite right but wasn't sure what. I only hoped that he would make it to his doctors appointment at UAB yesterday. Even though he could hardly keep his eyes open, we did make it to see the doctor. After about 2 minutes the doctor determined that Tom needed to be admitted to the hospital. As the blood test results started to come in, the first thing that the doctor noticed was Toms potassium level was really high. In fact, he sent Tom to the ER to get it addressed first. We were there from about 2 pm yesterday until 8 pm last night and then moved to a room. Tom did get a combination of medicine in the ER to help with the potassium level. It was after 10 pm before they began treatment for his ammonia level which was 175! Normally that high of an ammonia level would make Tom very disoriented but he really didn't get that way until about 1 pm yesterday. Anyway, by 1 am this morning, Tom was alert. They've stuck him for blood/IV's about 20 times. I don't know the results from this mornings blood work yet and I'm waiting to see the doctors before I head home to get some "stuff". I thought about sticking some clothes in the car yesterday "just in case" but changed my mind. Certainly regretting that decision. I am very glad we are at UAB this time instead of Baptist. No offense, but this is where Tom needs to be. I hope they can determine if the Denver Shunt is working too, I have been really worried about it.

Right now, all I know is that they are testing blood cultures to see if there is any kind of infection that is causing the high ammonia level. I'm guessing we have another couple of days here but hope to know more after the doctors visit.

DOCTORS VISIT REPORT

There is not really much to say.  Dr. Rutland decided not to "stick" Tom for an ammonia level since he had been "stuck" so many times recently.  I guess he seemed satisfied that Tom was doing well.  The reason he stopped the lasix was because he didn't want Tom to become dehydrated but did suggest that maybe Tom take some lasix throughout the week.  Tom is starting to hold some fluid again so I hope he will take the doctors suggestion and take the lasix.  We'll also see what UAB says next week.

Tom drove himself to the doctors office yesterday and has made a couple of trips to the grocery store.  He has an Rx for physical therapy so he should be scheduling those visits.

Please continue praying that his health will stablize and Tom will focus on healthy nutrition and exercise.

ON HIS OWN

Tom did really well yesterday while I was at work.  A big difference from last weekend when he was still sluggish after being released from the hospital.  He was to have lunch with a friend of his today so I'm trying not to worry about him being "out and about". 

I had to go to the hospital today to get copies of his lab test results from this last hospital visit.  In the past, the nurses would give this info to me.  This group was not as willing.  First I had to get a form, then have Tom sign it last night.  Fortunately it was not a long wait to get the printout.  I have faxed them to UAB just to see if these results will change the MELD score any.  Tom has a doctors appointment tomorrow and I will get those too.  Maybe if I'm faxing blood test results every week or so, they will remember who we are!!  Of course, we'll be there next week for a doctors appointment.

I am still concerned about Tom's fluid level and will ask Dr. Rutland tomorrow about the lasix.  It was not on the discharge orders so Tom has not been taking it.  He's still taking another diuretic but I don't know that it is enough.  I'm not convinced that the pump is being pumped (by Tom) as much as it should be or that it isn't clogged.  Hopefully we can get that resolved next week.

The weather here is absolutely beautiful.  Tom said he was planning to walk around in the yard with the pups when he got home from lunch.  I wonder if he can use the wheel barrow as a walker and pick up sticks along the way?!?

I've been able to accomplish so much at work and at home now that Tom is out of the hospital.  I hope it continues!!

Blessings to all!

Tom is home (again)

Dr. Rutland came by about noon and told Tom that he was going to look at all of the test results again before deciding to let Tom go home. Finally, Tom got home about 4:30 or so. Dennis was at the hospital visiting and offered to take Tom home, so I left to take all the stuff and get it unloaded. I had been on a bike ride so it gave me a chance to get my bike unloaded too.

Tom will go for follow-up blood tests on Tuesday or Wednesday.

He's feeling good. There is one antibiotic that's been added to his medication list but it appears they have taken off the lasix. I'm worried he is not pumping correctly or as much as he should so I'll be watching that closely. I'm not against giving him lasix - we have a lot of it. Please pray that Tom will truly make an effort to take better care of himself with exercise and his nutrition. Also pray that I won't enable bad habits.

I'm missing that extra hour of sleep from last night but I'm sure enjoying the extra daylight this evening. Maybe I can get to some of the weeds in the yard this week!

Still here

Tom's UTI is a form of staph infection that is highly unusual. They are still working on finding an antibiotic specifically for it that Tom can take. Because he is allergic to penicillin and a couple of others, he cannot take those - which would probably be what they would give him. Anyway, once they find something that works, they will have to give it to him and then watch to see how he responds. So, he's still hoping to go home tomorrow, I'm thinking Monday. when they came to give him the IV Cipro this morning, the vein blew out so they had to wait for IV therapy to come and stick him again. He said the lab had trouble getting blood this morning too.

The hospital tests for staph each time he comes in. They told us when he was here last week that he tested positive yet they never treated it. I asked Rutland about this yesterday. I just wonder how long all of this has really been going on?

Needless to say he was extremely upset this morning and then he was mad. He's a little better now that I'm here (he's called me 4 times today). I did manage to get to my kick-box class at the Y.

We got out of the room and walked all over the floor last night - even went to the nursery to see the new babies. Is pretty nice here so I'll try to find a wheelchair and take him outside in a little while.

Visits from 2 doctors

Finally, finally, FINALLY I got to talk to Dr. Rutland today. He is confidant that the cause of this latest ammonia spike is the urinary tract infection (UTI). Tom probably got that from the catheter he had during last weeks hospital stay. They are giving him the antibiotic Cipro which is a broad-spectrum antibiotic right now while they "grow cultures" to see what specific kind of antibiotic they can give Tom for the UTI. I asked Dr. Rutland when that would be complete and he said "maybe tomorrow". Because Tom is allergic to several antibiotics he may need to continue to take Cipro which he was taking in pill form about 3 weeks ago. I asked Dr. Rutland what I could have done in this situation to keep Tom out of the hospital. He basically said "nothing". Even if Tom would have had blood tests run in the doctors office on Wednesday, he still would have been sent to the hospital. The advantage of being in the ER, i guess, is they check everything, including urine or it would probably have been a while (if ever) before anyone thought to check for a UTI. Tom has not had a temperature and his white blood cell count is only slightly elevated. It's just always something different!!

Last night Dr. Miller, the gastroenterologist, came in to Tom's room and talked to him for about 45 minutes. He was instrumental in getting Tom to UAB. We've sort of had a love/hate relationship with him in the past. Tom was really impressed that Dr. Miller spent so much time discussing various things about the different transplant programs and such. He also encouraged Tom to keep doing what he was doing and not to try to skip meds or anything like that to try and advance the process. I think it really helped Tom a lot.

Of course, Tom wants to go home. Dr. Rutland said maybe in a day or two, once they get the results of the cultures. Good news for us is that Dr. Rutland is on call this weekend so he will be seeing Tom.

All of Tom's levels look good. Aside from lack of sleep (for both of us) and that the lab had to draw blood from Tom twice today because the first blood "clotted", Tom has had a good day. The second blood draw was extremely painful. I was there and watched the tech practically dig to China with the needle.

Since Tom is on a low sodium, low protein diet, I asked Dr. Rutland about that and its relationship to the ammonia level. Although he doesn't think anything Tom ate specifically affected the recent ammonia level issues, food can be a factor and he suggested we monitor it and make sure that Tom doesn't consistently eat high-protein foods and that there is balance. In the recent past Dr. Rutland was more concerned that Tom simply got nutrition/callries and he is still emphasizing that.

So, into the weekend we go. I will remain on "high-alert" to pick up Tom the moment he is discharged.

Ammonia level 30

Unbelievable how it changes! I still don't get it. I wasn't sure what to expect this morning but Tom was awake and doing well. He didn't sleep much last night because they kept coming in to get him caught up on his meds. He has a urinary tract infection so they are giving him IV cipro again. At least we know now to watch for his ammonia to spike when he gets done taking it. I hope they don't plan to keep him for 10 or 14 days to finish all of that. Once again, Dr. Rutland arrived shortly after I left this morning so I didn't get a chance to talk to him. Tm said he didn't really offer much information. I placed a call to his office to see if they could give me an idea of when I might be able to catch him tomorrow. He's only in the office a half-day on Thursdays. We'll see if I get a response.

I sent all of the blood test results I had to UAB this morning. They only had two complete sets and one set would raise his score back to 13. It's not much but it's something. They will submit those results and if the tests from this week improve that score, they will be submitted. Doesn't appear that they will change his score much though.

I have a bike maintenance class tonight so Tom is pretty bummed he will be alone most of the evening. He gets bored. I offered to cancel the class but he told me to go. I'll see him beforehand and if the class doesn't run too late, I'll go back after. I'd be happy to sit and read a book but, then again, I haven't been "trapped" as long as he has either.

I'm kind of worried about his pump. It doesn't feel the same to either one of us so I'm placing a call to the doc to see what we can do about it. It's very tender so I hate to keep pressing to try and figure it out.

Well, i better get back to work.

Small changes

Tom was still in ER when I had to leave at 12:30 to go to the building next door for an appointment. Naturally Tom's doctor arrived while I was gone (if I didn't have bad luck, I'd have no luck at all). When I got to his room, he was alert and talking sensibly. He still had not had any ammonia medicine. They gave him the first dose about 3 pm! It's weird how he was clear headed without the medicine. He's a little groggy tonight but is telling me details about the address Obama gave yesterday. That tells me he's still pretty sick :-). He NEVER listens to any presidential address!

He's very hungry and thirsty and was worried that his kidneys had shut down again. I assured him that was not the case and they are working fine. He's on a different floor than normal, beds are in short supply here. It's kind of a pain to re-train everyone but it might also help to have "new eyes" too. They have been shorthanded today but hopefully will have a full staff tonight.

They are monitoring his sodium and protein which is making Mealtime difficult because he can't always have everything he wants and it frustrates him.

For now I am relieved he is here where he has help and I'm not worried about what is wrong or what will happen at home. Tomorrow I really need to work. I've been out of the office for 3 days and have a whole bunch to do. Of course, Tom wants me here - he gets so bored, and he has trouble using the remote or phone from time to time. Maybe he'll get some physical therapy.

His doctor sent lab reports from last week to UAB to see if they would raise his meld score but none of the tests were complete. The charge nurse today has made sure that all tests will be run every day and we can send those to UAB as well to see what they will do. I talked to the blue cross case manager today about the repeated hospital stays and his score being so low. She is reaching out to UAB just to make sure they know about all of the trips to the hospital. It seems there is a disconnect - maybe because we are in a different city. I would have thought Tom's doc called them each time to discuss things and I'm not sure why that doesn't happen. Hopefully there will be more communication in the future. I told her if I needed to be doing something more to please let me know. I'll be happy to call them each time but I rarely talk to a person and usually leave a voicemail message. We go down there Ina couple of weeks and I was planning to discuss these things with the doc then.

Ok that's enough for now. Going to try to do a little bit of work tonight. I'll post again tomorrow. Thanks for praying, I hope the docs can figure this out!

Not better

Although Tom slept a record-breaking 9 straight hours last night he is still very lethargic and a bit confused this morning. I went ahead and called for transport to the hospital because I was afraid if he tried to get up, I wouldn't be able to help him. He was able to get up with help and go to the bathroom before going to the hospital but I'm not sure I would have been able to get him in the car on my own. More than anything, I just want to know what is wrong!!! His BP is good, his blood sugar was 97 at home, his oxygen was 91 so I just don't get it. Maybe he just needs a bottle of 5-hour energy or something! We're in the ER now waiting on blood test results.

He didn't eat dinner last night and has not taken his meds this morning, nor had breakfast. He said he "could probably eat something" but of course they won't let him have anything.

What I know this far is that his ammonia level is back up to 130. He's getting an IV with folic acid, magnesium and vitamin B-1. He usually takes folic acid at night and magnesium in the morning.

Certain foods make the ammonia level go up. The docs have not been concerned about what he is eating, they just wanted him to eat. I pulled out the list last night and he eats a good bit of items on the list (of course, it's all the good stuff). Fish was one of the foods and he had it for dinner Monday night and for lunch yesterday. I really don't think that is the sole cause but something we need to start watching. I was just told they were going to admit him, Tom is pretty upset.

Just talked to the ER doc. He doesn't think the food is an issue. He is engaging the GI folks to see if there is a reason his body is not absorbing the ammonia medicine. It's taken me an hour to get this written. I'll post another update later.

Home from Austin

Im home from Austin. There are no words that can thank our friends Ellen and Dennis enough for staying with Tom while I was gone. It's not been an easy time. Tom seems to constantly be on the edge of disorientation. He's "come back" but I am at a loss as to what the problem is. I had hoped he would be ok enough for me to go to work tomorrow and then take him to the doctor for bloodwork but I'm rethinking that because he is currently not in a condition that I can leave him alone. I arranged to have bloodwork done tomorrow with a doctors visit on Friday. As I write this I am trying to decide whether to take him to the ER. I fear he is going to get worse instead of better but I know he's had all 3 doses of ammonia medicine today. He's had two good meals and he is so tired it appears he will be sleeping through dinner. He cannot keep his eyes open. I just don't know what to do! I can't believe it would be ammonia. I wonder if it is blood sugar or potassium level or dehydration?

I just ask that you pray for us and that we can figure out why Tom isn't getting past this confusion thing.

Tom is home!

The doc on-call originally said he was going to run blood tests in the morning and if they looked ok, he could go home. He asked Tom if there was anything he needed, Tom said "discharge me". The doc read his ammonia level and hematocrit (which the nurse had already told me was 32). The chart he had showed an ammonia level of 128 and hematocrit of 25.6. I questioned both readings so he went back to check the computer and called the room and told me Tom's ammonia level was 78 and his hematocrit was indeed 32. He said there was no reason for Tom to stay so if he wanted to go home, he could. I asked Tom and his response was "whatever you think". I'm sure most wives would love that response all the time but quite frankly, I'm getting tired of it.

Tom is very tired and that worries him. Therefore I am worried too. The doc said there was nothing different they would be doing at the hospital that we couldn't do at home. He has done ok so far so please, please pray that he can stay home. I'm trying not to second guess myself for coming home. I will admit it was a selfish decision although I thought he would feel better being at home too. The puppies were super excited to see him!

All of his other readings looked good. They have even reduced the amount of lasix he's taking. I'll take Tom to the doctor next week to have his blood tested again just to make sure things are still ok. I am planning to go to Austin, TX on Monday morning and come home Tuesday afternoon. Our friends are helping out to stay with Tom while I'm gone. Originally, Tom was going to stay by himself but since he's spent the past 7 days in the hospital we felt it was better if someone stayed with him.

I'm praying for a quiet night and that we won't have to make a trip back to the hospital. I am going to have faith that everything is ok and Tom just needs to rest.

I was right!

I don't get to say that often so I thought I'd use it as the title of this post. Tom was being connected to his first unit of blood when I arrived this afternoon. He will receive two units over the next 7-8 hours. He is still grouchy and somewhat lethargic. Tom said Dr. Rutland mentioned that his ammonia level was up a little from yesterday but that doesn't necessarily mean anything since they really use it as a guide and it does fluctuate. His hematocrit was a little higher today but I guess Dr. Rutland likes having a mad patient. I think/hope the blood will make Tom feel better. They have blood work ordered for tomorrow so if that looks good, maybe he will get to go home. Please pray that he does. He missed physical therapy today because they came right has the blood was being connected.

Weve survived the "code gray" (tornado warning) and it appears to be clearing up. Hopefully we've missed the really bad stuff they were predicting.

I hope everyone else in the affected areas is ok!

NOT GOING HOME YET

That's about all I know.  Tom is very upset and told me he would talk to me when I got to the hospital later today.  So from that, it doesn't appear he will be going home today.  As we head into the weekend, if his doctor is not "on-call", I'll be very upset as well if he has to wait the weekend out.  That will certainly mess with too many things we have going on.  Tom is really doing well.  His ammonia level was in the 80's yesterday.  His doctor was watching his hematocrit so I'm wondering if that went down and they are going to give him blood - certainly a guess at this point because Tom will not tell me anything over the phone.  I can't tell you how excited I am to go and sit with him tonight - NOT!

They are predicting really bad weather here in Nashville this afternoon.  It's sunny outside right now but I understand Jim Cantore is in the hotel right next to my office building.  That can't be good. 

There has been no Internet access at the hospital all week unless you want to do something at 3 a.m.  Tom said that's the only time he can get on.  That's why the updates are so sporatic.  When I get home, I get so busy doing other things, I just forget.  If I've talked to someone during the day and updated them, I tend to think everyone else knows too.  I'll at least try to post something short from my cell phone tonight to let you know the story. 

We might be hanging out in the hallway with the other patients tonight.

I am praying for the safety of all those in the path of the storms.