Tom has really enjoyed being home and is really working hard to get stronger. I think he is trying to prove to me that no one needs to stay with him all the time. I'd like to believe him but he also tends to push his limits - something I want him to do but only when someone is there. He's receiving physical therapy a couple of times a week so that will be good for him as well.
He had a busy day yesterday - running a couple of errands and spending about 3 hours at the eye doctor. He got some new glasses shortly after his first hospital stay but they are not working for him anymore. We don't know whether his medical issues have something to do with it or what but this time I got him to go to "my" eye doctor who, based on the amount of time Tom was there, probably did a more thorough job of assessing his needs. So, here's a shout-out to Dr. Gene Harman of Brentwood Eye Clinic!!
Tom is also loving having the puppies home. Of course, after Finley peed on the bed Wednesday night, I was ready to send them back! I don't know whether they will stay with us for a while or not. I've missed their sweet faces too but they are just one responsibility I don't need right now. Tom wants them to stay so I'm thinking that maybe in a couple of weeks we can take them back down to Georgia, spend some time with the family and leave them behind (I know, that sounds cruel - but my niece and her family are really spoiling them so I'm not worried at all).
I'm still not ready for "the call". I have some things ready to go - sheets, towels, blankets for the townhouse but not the most important thing - clothing. Tom is pretty much packed but I have stuff all over the house so I really need to try to gather it together and maybe load it in the car this weekend.
It has been so great to have Cathy here again to help. She has shuttled Tom from place to place while I've gone into work for a couple of days. They had dinner ready when I got home last night - which I LOVE!
Tom has a doctors appointment in a couple of weeks. Hopefully things will stay stable until then (and after). I'll probably post an update every few days because there is not really much to report unless you want to know what he is eating! Please keep praying that he gets stronger while he can and that he doesn't get too sick. If we could move up about 5 points on the list, I think we would be good to go pretty quickly. I just don't want that to cause another hospital stay until it's time for the surgery!
Through your prayers, God has carried us so far. We are so blessed and so thankful!
Friday, October 28, 2011
Tuesday, October 25, 2011
DOUBLE BLESSINGS
Tom is officially on "the list"! Dr. Covington came in yesterday afternoon and gave us the GREAT news followed by the transplant coordinator who delivered our packet and the official letter!
In addition, we are HOME!
Tom and I arrived home last night about 9:15. By the time I got him settled, the car unloaded, unpacked and all it was 12:30! I have no idea where all the "stuff" came from! I'm sorry for not posting last night but I doubt it would have made much sense.
Tom got up once overnight (a new record) and said he was sleeping well - in fact, he's still asleep. I didn't sleep as well as I had hoped but I'll survive (I was more excited about my own shower)! I think we were both worried about getting him in the house but he did really well. It's not something he will be doing a lot of quite yet.
Home Health is supposed to contact us today. Tom will be working out with them for a while. I will stay home for the next couple of days and then Cathy will be here to help. Tom really needs someone with him all day for the next couple of weeks so I'm trying to work on that plan. Hopefully after that he will be able to stay on his own and maybe my neighbors can check in on him.
Tom's MELD score is now at 21, so he's not very high on the list. This is great in terms of how he is doing but just means the wait will be longer. New labs are not required until November 22! We are supposed to make an appointment with Dr. Rutland in a couple of weeks so I will request that Tom's blood get checked then - I don't want to wait a month. If those results give him a higher MELD score, they will be submitted. Tom is worried about the wait. I told him he is in much better health than he was even 6 weeks ago and if he feels at all like something is wrong, I will take him to UAB immediately. It takes us about 2 1/2 to get there which isn't too bad.
Hopefully today Tom will get settled in. He tends to want to do a lot more on his own so I'll have to encourage him to take it easy. I don't want to have to call the Fire Dept. to help get him off the floor! I'd love for him to be able to do everything on his own but hopefully that will come soon.
Have some work to do, more later!
In addition, we are HOME!
Tom and I arrived home last night about 9:15. By the time I got him settled, the car unloaded, unpacked and all it was 12:30! I have no idea where all the "stuff" came from! I'm sorry for not posting last night but I doubt it would have made much sense.
Tom got up once overnight (a new record) and said he was sleeping well - in fact, he's still asleep. I didn't sleep as well as I had hoped but I'll survive (I was more excited about my own shower)! I think we were both worried about getting him in the house but he did really well. It's not something he will be doing a lot of quite yet.
Home Health is supposed to contact us today. Tom will be working out with them for a while. I will stay home for the next couple of days and then Cathy will be here to help. Tom really needs someone with him all day for the next couple of weeks so I'm trying to work on that plan. Hopefully after that he will be able to stay on his own and maybe my neighbors can check in on him.
Tom's MELD score is now at 21, so he's not very high on the list. This is great in terms of how he is doing but just means the wait will be longer. New labs are not required until November 22! We are supposed to make an appointment with Dr. Rutland in a couple of weeks so I will request that Tom's blood get checked then - I don't want to wait a month. If those results give him a higher MELD score, they will be submitted. Tom is worried about the wait. I told him he is in much better health than he was even 6 weeks ago and if he feels at all like something is wrong, I will take him to UAB immediately. It takes us about 2 1/2 to get there which isn't too bad.
Hopefully today Tom will get settled in. He tends to want to do a lot more on his own so I'll have to encourage him to take it easy. I don't want to have to call the Fire Dept. to help get him off the floor! I'd love for him to be able to do everything on his own but hopefully that will come soon.
Have some work to do, more later!
Monday, October 24, 2011
WAIT WAIT WAIT
I've talked to the insurance company and they assured me Tom is approved for a skilled-nursing facility. Now we are waiting on the hospital to find a bed in hopefully 1 of 3 locations in Franklin. Of course, I hope he can go to the same place he was before because it is so close to home. Tom is really doing well so I don't know if rehab will keep him very long. He will still need someone with him at home so I am working on that if we need it.
One way or another, we are out of here tomorrow - whether it is home or to rehab. The fluid is finally going away but it is a slow process. Dr. Smallfield said the adrenal insufficiency and steroid treatment will be a life-long thing. It is just a low-dose steroid so it is not a big deal. He said he was glad Dr. Covington found it as they will pump him up with heavy steroids before his surgery to help his body deal with the stress. Dr. Covington said taking the steroids should actually make him feel better right away. Dr. Smallfield thinks that the adrenal insufficiency was probably what elevated his WBC in past hospital visits!!
Of course we have no idea how long we will wait to get a liver. I can guarantee that all of my cell phone conversations will become very short and may be not-so-sweet so I can be ready for "the call". My mind is spinning with everything we will need once we come back so I'm anxious to get home and get it all together.
Tom was up and ready to walk at 7:15 this morning. So, with me in my slippers, jammies, glasses and bed-hair, off we went. Running to the coffee pot is one thing but walking the "big lap" is another - oh well! I think it might have been difficult to tell which one of us was actually the patient!
Well, off to wait some more.
One way or another, we are out of here tomorrow - whether it is home or to rehab. The fluid is finally going away but it is a slow process. Dr. Smallfield said the adrenal insufficiency and steroid treatment will be a life-long thing. It is just a low-dose steroid so it is not a big deal. He said he was glad Dr. Covington found it as they will pump him up with heavy steroids before his surgery to help his body deal with the stress. Dr. Covington said taking the steroids should actually make him feel better right away. Dr. Smallfield thinks that the adrenal insufficiency was probably what elevated his WBC in past hospital visits!!
Of course we have no idea how long we will wait to get a liver. I can guarantee that all of my cell phone conversations will become very short and may be not-so-sweet so I can be ready for "the call". My mind is spinning with everything we will need once we come back so I'm anxious to get home and get it all together.
Tom was up and ready to walk at 7:15 this morning. So, with me in my slippers, jammies, glasses and bed-hair, off we went. Running to the coffee pot is one thing but walking the "big lap" is another - oh well! I think it might have been difficult to tell which one of us was actually the patient!
Well, off to wait some more.
Sunday, October 23, 2011
Early update
Posting early today because I think all that is going to happen has already happened. We were up early this morning. Tom has had a shower which I know made him feel better. Dr. Covington came in this morning and explained the adrenal issue. They are giving Tom some low dose steroids for it.
Dr. Terrazzo came in on rounds and said the same thing. Tom asked if it would affect the listing or anything else and he said no.
The meeting is at 4 tomorrow so we will be holding our breath until we hear the word that he is on the list. All the docs have said Tom doesn't need to be in the hospital anymore. I asked about the stuff they give him from time to time but the docs assured me the levels are not changing that mauch and they can manage it. I hope we can get the news and then head home tomorrow. Dr. Covington said if reehab wouldn't take him, Tom would go home with home health so we'll handle it either way.
Dennis came down to visit today so I may head out and do some of that shopping I was thinking about yesterday. Give Tom some male bonding time. He's probably tired of women fussing over him!
Hope to share the good news on the next post.
Dr. Terrazzo came in on rounds and said the same thing. Tom asked if it would affect the listing or anything else and he said no.
The meeting is at 4 tomorrow so we will be holding our breath until we hear the word that he is on the list. All the docs have said Tom doesn't need to be in the hospital anymore. I asked about the stuff they give him from time to time but the docs assured me the levels are not changing that mauch and they can manage it. I hope we can get the news and then head home tomorrow. Dr. Covington said if reehab wouldn't take him, Tom would go home with home health so we'll handle it either way.
Dennis came down to visit today so I may head out and do some of that shopping I was thinking about yesterday. Give Tom some male bonding time. He's probably tired of women fussing over him!
Hope to share the good news on the next post.
Saturday, October 22, 2011
Quiet day
It's been a realively quiet day today. It started with Tom asking me what my plans we're ??? I said to take care of you. He said he wasn't sure if there we any shopping malls close. Little did he know I know exactly where the good shopping is - it was so tempting to head out but I stayed. Tom completed a two lap walk just as physical therapy arrived so they did some other exercises. Toms calves are really bothering him so she stretched those for him. Our "group" of docs came in and said things are looking good. I asked about being "listed" on Monday and was told they will meet at 4 but they still don't see any reason why he won't be.
They took a lot of blood for tests yesterday morning and then came rushing in yesterday afternoon and drew some more. Tom and I got a little concerned and asked the nurse about it. She really wasn't sure but told us not to worry and she would send the doctor in to help answer questions. He came in about 2 am but didn't have many answers. Toms WBC is high again but they think it's an adrenal gland thing which can be treated with steroids but they didn't give him any of those today. He did get two units of the cryogenic stuff that helps his blood clot. It still makes me nervous that every couple of days they give him something like that. If Tom goes to rehab or home, we won't have that constant monitoring. It's not obvious that things like that are not right.
Tom has had a bit of attitude since I returned. I told him today I think his limit is two weeks. He did pretty good the two weeks at Baptist and then the first two weeks here but he's getting a little "snippy" with everyone. I really can't blame him and I can handle it if he's snippy with me, I just don't like him being that way with everyone else. Maybe that change of scenery will really come early next week.
I really wanted to go outside today because it was so beautiful but Tom wasn't interested. Maybe he'll be up for it tomorrow. He napped through football and I read a book and cleaned his room as much as I could with limited supplies. The housekeeping service is not that great here. We had a good tech today so she was able to get everything on my list that we needed.
It deemed like we had a lot of interruptions last night, hopefully tonight will be less busy!
Thanks faithful followers. Pray on. . . .
They took a lot of blood for tests yesterday morning and then came rushing in yesterday afternoon and drew some more. Tom and I got a little concerned and asked the nurse about it. She really wasn't sure but told us not to worry and she would send the doctor in to help answer questions. He came in about 2 am but didn't have many answers. Toms WBC is high again but they think it's an adrenal gland thing which can be treated with steroids but they didn't give him any of those today. He did get two units of the cryogenic stuff that helps his blood clot. It still makes me nervous that every couple of days they give him something like that. If Tom goes to rehab or home, we won't have that constant monitoring. It's not obvious that things like that are not right.
Tom has had a bit of attitude since I returned. I told him today I think his limit is two weeks. He did pretty good the two weeks at Baptist and then the first two weeks here but he's getting a little "snippy" with everyone. I really can't blame him and I can handle it if he's snippy with me, I just don't like him being that way with everyone else. Maybe that change of scenery will really come early next week.
I really wanted to go outside today because it was so beautiful but Tom wasn't interested. Maybe he'll be up for it tomorrow. He napped through football and I read a book and cleaned his room as much as I could with limited supplies. The housekeeping service is not that great here. We had a good tech today so she was able to get everything on my list that we needed.
It deemed like we had a lot of interruptions last night, hopefully tonight will be less busy!
Thanks faithful followers. Pray on. . . .
Friday, October 21, 2011
Staying put
It looks like Tom is staying put at UAB for the weekend. Our case manager here said there yuxwould probably be a bed in rehab in Nashville early next week. I'm was planning to head home Monday but may wait until Tuesday if he still hasn't moved.
I was very impressed with how well Tom is getting around! He even took a shower this morning. He still needs to gain strength but he's working on it. I'd like to see him start working on steps because I think that will really help his leg strength. Our tech found a wheelchair so we rode down to the cafeteria and got some lunch. Tom chose a ribeye sandwich and onion rings. I'm sure he's had a weeks worth of sodium! I was just good to go somewhere else. I hope we can hold on to it and maybe go outside this weekend.
Tom's white blood cell count is back up again but there is no sign of infection so they did some blood tests to check his cortisol level. We should hear about that later today. It seems like every couple of days they find something so that just confirms for me that rehab is the best idea at least for as long as he can. Having trained eyes on him will hopefully catch something and maybe they will order more frequent blood tests.
I received a call today from Dr. Rutland, Tom's Nashville PCP. He was asking about Tom's status. I was happy to give him the good news.
I was very impressed with how well Tom is getting around! He even took a shower this morning. He still needs to gain strength but he's working on it. I'd like to see him start working on steps because I think that will really help his leg strength. Our tech found a wheelchair so we rode down to the cafeteria and got some lunch. Tom chose a ribeye sandwich and onion rings. I'm sure he's had a weeks worth of sodium! I was just good to go somewhere else. I hope we can hold on to it and maybe go outside this weekend.
Tom's white blood cell count is back up again but there is no sign of infection so they did some blood tests to check his cortisol level. We should hear about that later today. It seems like every couple of days they find something so that just confirms for me that rehab is the best idea at least for as long as he can. Having trained eyes on him will hopefully catch something and maybe they will order more frequent blood tests.
I received a call today from Dr. Rutland, Tom's Nashville PCP. He was asking about Tom's status. I was happy to give him the good news.
Thursday, October 20, 2011
APPROVED!
This afternoon, a transplant case manager from Blue Cross called and told me she had been assigned our case and had approved a transplant!!!
Dr. Smallfield informed Tom that he was almost certain that Tom would be listed on Monday.
If there is any bad news it's that Tom was not approved for rehab in Alabama. The doctors and insurance companies are working to find a rehab bed in Nashville. Hopefully, one way or another, Tom will be heading back to Nashville tomorrow or Monday.
Tom will have blood tests every couple of weeks and the doctors will monitor him that way. We will have our bags packed and sit by the phone and wait for "the call".
When Tom arrived at UAB, his MELD score (how they rank transplant recipients) was 31. The higher the score, the higher on the list he is placed. Since he has improved, his MELD score has dropped to 22 so he's not going to be as high on the list. UAB typically transplants at a MELD score of 23 or above. I know that all might sound strange but there will be a time when it is Tom's turn.
I think I am still in shock. I am heading to Birmingham first thing in the morning and will hopefully be able to bring Tom back to Nashville myself at some point.
We are praising the Lord for these answered prayers!
Dr. Smallfield informed Tom that he was almost certain that Tom would be listed on Monday.
If there is any bad news it's that Tom was not approved for rehab in Alabama. The doctors and insurance companies are working to find a rehab bed in Nashville. Hopefully, one way or another, Tom will be heading back to Nashville tomorrow or Monday.
Tom will have blood tests every couple of weeks and the doctors will monitor him that way. We will have our bags packed and sit by the phone and wait for "the call".
When Tom arrived at UAB, his MELD score (how they rank transplant recipients) was 31. The higher the score, the higher on the list he is placed. Since he has improved, his MELD score has dropped to 22 so he's not going to be as high on the list. UAB typically transplants at a MELD score of 23 or above. I know that all might sound strange but there will be a time when it is Tom's turn.
I think I am still in shock. I am heading to Birmingham first thing in the morning and will hopefully be able to bring Tom back to Nashville myself at some point.
We are praising the Lord for these answered prayers!
Wednesday, October 19, 2011
NO CHANGE
Well, it sounds like it was a pretty dull day in Birmingham. Tom was a bit more tired today, he walked twice (long lap) which was really good. Mom said he's complaining about his foot hurting - we think it's because we keep jamming it with the rolling tray.
Anyway, he's still not moved to rehab because they are waiting on insurance approval. Maybe something will happen tomorrow.
His sister, Debbie is scheduled to arrive tomorrow night to stay with him. My parents will leave on Friday. I hope to get there Friday afternoon or evening for the weekend.
I must say that even in the dark and rain, I enjoyed the nice, quiet drive home last night. I was able to just think. I slept OK but woke up about 2 am with no idea where I was and I couldn't find Tom. It is hard to be away from him but we probably need the break from each other.
It sure was nice to be at work today. My co-workers have done so much to allow me to be gone, it was nice to do some of my own work. More than anything, it was good to see them!!
I've managed to get some things done at home - laundry, re-packing, ironing - stuff like that. I also got the tires rotated and balanced on my car - something that needed to be done back in March!!
I received an e-mail from Tom's dad this afternoon, Tom gave him a call today. For some reason Tom's voice has been weak the past couple of days so it's difficult to understand him but I know it was good for his dad to hear Tom's voice.
I guess that's it. Maybe there will be more exciting news to report tomorrow. We still need to be on that list, then get a liver, then get through surgery and recovery . . . but . . . one day at a time!!!
Anyway, he's still not moved to rehab because they are waiting on insurance approval. Maybe something will happen tomorrow.
His sister, Debbie is scheduled to arrive tomorrow night to stay with him. My parents will leave on Friday. I hope to get there Friday afternoon or evening for the weekend.
I must say that even in the dark and rain, I enjoyed the nice, quiet drive home last night. I was able to just think. I slept OK but woke up about 2 am with no idea where I was and I couldn't find Tom. It is hard to be away from him but we probably need the break from each other.
It sure was nice to be at work today. My co-workers have done so much to allow me to be gone, it was nice to do some of my own work. More than anything, it was good to see them!!
I've managed to get some things done at home - laundry, re-packing, ironing - stuff like that. I also got the tires rotated and balanced on my car - something that needed to be done back in March!!
I received an e-mail from Tom's dad this afternoon, Tom gave him a call today. For some reason Tom's voice has been weak the past couple of days so it's difficult to understand him but I know it was good for his dad to hear Tom's voice.
I guess that's it. Maybe there will be more exciting news to report tomorrow. We still need to be on that list, then get a liver, then get through surgery and recovery . . . but . . . one day at a time!!!
Tuesday, October 18, 2011
"90% Sure he's on the list"
But we won't know for sure until next Monday when the "whole group" meets again. So, we wait some more. Dr. Terazza-Perez told me this evening that they are still waiting on insurance approval to move Tom to Spain Rehab here at UAB and they should know something Wednesday or Thursday. If insurance doesn't approve that, they will try for a rehab in Nashville. If that is not approved, I guess he will come home.
Dr. Terazza-Perez said there was a 90% chance that Tom would be listed but not until next Monday. The chief surgeon wanted to meet with everyone together as a group and go over everything again. Tom doesn't like it, I don't like it but it's just the way it is.
I am leaving Birmingham as soon as I publish this post to head home and work a few days. I will post an update with info from my parents but it will probably be in the evening after work.
Dr. Terazza-Perez said there was a 90% chance that Tom would be listed but not until next Monday. The chief surgeon wanted to meet with everyone together as a group and go over everything again. Tom doesn't like it, I don't like it but it's just the way it is.
I am leaving Birmingham as soon as I publish this post to head home and work a few days. I will post an update with info from my parents but it will probably be in the evening after work.
STILL WAITING
I know you are all anxious to hear about "the list" status and so are we. The surgeons are in surgery so that is the reason for the delay. I did talk to one of the residents and he told me he didn't see any problems with Tom being placed on "the list" so we are extremely hopeful - I just want to hear it from Dr. Smallfield's mouth!
Tom has been a walking machine today - using his regular walker instead of the podium walker. The hospital has approved him to go to rehab but they are still waiting on insurance approval. The resident said he probably would not go today so that's OK. I still hope to head home shortly and if Tom does not get into rehab, Mom and Dad will bring him back to Nashville tomorrow. All plans are fluid - something I am still struggling to get used to.
Our puppies were "fixed" yesterday and I'm happy to report that they are doing well. We are so blessed that our niece, Meagan and her husband Jeremy have taken on the challenge of caring for them for us. Meagan didn't want them to stay overnight after surgery and picked them up yesterday afternoon. I have not worried about them for one minute and that has been wonderful. I only worry whether she will give them back!
Please keep praying . . .
Tom has been a walking machine today - using his regular walker instead of the podium walker. The hospital has approved him to go to rehab but they are still waiting on insurance approval. The resident said he probably would not go today so that's OK. I still hope to head home shortly and if Tom does not get into rehab, Mom and Dad will bring him back to Nashville tomorrow. All plans are fluid - something I am still struggling to get used to.
Our puppies were "fixed" yesterday and I'm happy to report that they are doing well. We are so blessed that our niece, Meagan and her husband Jeremy have taken on the challenge of caring for them for us. Meagan didn't want them to stay overnight after surgery and picked them up yesterday afternoon. I have not worried about them for one minute and that has been wonderful. I only worry whether she will give them back!
Please keep praying . . .
Monday, October 17, 2011
NO LIST YET - BUT CLOSE
The echo-cardiogram report did not make it to the Transplant Coordinator in time to make it to the meeting tonight but the surgeons are going to look at the report tomorrow and we should have an answer by "rounds" which are usually about 10 am. So, mom and I will be spending the night with Tom tonight.
His doc said the pulmonary pressure test was slightly elevated but not out of range and shouldn't be an issue so we're just hoping and praying the echo report causes no problems.
Tom didn't have a very good day today. He had stomach cramps for most of it. The doctor came in and checked him out and decided it was probably low potassium. They have been giving him IV potassium this evening. Mom and Dad think he is much more alert. He's also getting iron supplements so that will hopefully make him feel better.
I am trying to get Tom into rehab for additional PT while he waits for a liver. I don't think he's too happy about it but I did sit down and explain my reasons this evening. I think the docs agree so if insurance allows it, he'll probably go there for a week or two (it may be in Birmingham or Nashville). Then, maybe in that time-frame he might get a liver. If not, he'll come home and wait from there.
Still very rugged, very high mountains to climb. Tom's attitude is great!
As soon as I know something on the list, I'll post it.
His doc said the pulmonary pressure test was slightly elevated but not out of range and shouldn't be an issue so we're just hoping and praying the echo report causes no problems.
Tom didn't have a very good day today. He had stomach cramps for most of it. The doctor came in and checked him out and decided it was probably low potassium. They have been giving him IV potassium this evening. Mom and Dad think he is much more alert. He's also getting iron supplements so that will hopefully make him feel better.
I am trying to get Tom into rehab for additional PT while he waits for a liver. I don't think he's too happy about it but I did sit down and explain my reasons this evening. I think the docs agree so if insurance allows it, he'll probably go there for a week or two (it may be in Birmingham or Nashville). Then, maybe in that time-frame he might get a liver. If not, he'll come home and wait from there.
Still very rugged, very high mountains to climb. Tom's attitude is great!
As soon as I know something on the list, I'll post it.
LEAVING HOSPITAL SOON
Well, Dr. Covington said Tom should be well enough to leave the hospital in a couple of days. Whether he gets added to the transplant list today or not, there is no need to keep him here. I am suggesting he go to rehab (either in Birmingham or in Nashville) because I just don't think he is quite ready to be at home yet. It makes me nervous on so many different levels. Of course I'd like him to stay near Birmingham if he makes the list but the docs assured me there would be plenty of time even if we were in Nashville. So, I guess I need to let that worry go. They also said there is a much greater chance for infection if he stays in the hospital or rehab. They still might have their rehab folks come down and evaluate him. I know Tom wants to go home but . . .
Dr. Smallfield reiterated Tom's improved health and seemed impressed with how he looked and how much he had walked. Everything he does requires assistance though so that pretty much means he could not be left alone. Fortunately, his aunt is available to help next week but it takes a lot of work to help him. I also am concerned with continued PT which he can get with some assistance with home health but I really want him to have a drill sargent. (I know that sounds mean but he needs to be as strong as he possibly can before surgery).
I mentioned in a previous post that Cathy put together a list of blessings we had received since arriving at UAB. I need to add to it but Dr. Covington was reading it this morning and announced "I made the blessings list". The docs got a kick out of the fact that the list referred to him as "Doogie Covington". He is very young (28 I think)! His nurse today was looking to see if she was on the blessings list so I guess I better add everyone so they will continue to take good care of Tom - don't want to make anyone mad.
I raised my concern about the meds Tom is getting via IV and the docs are already beginning to reduce those. Tom's iron level is really, really low so they've started an iron supplement. The electro-cardiogram test was not done last week so it is scheduled for 1 pm today. Hopefully this will be the last of the tests and the team won't be meeting until all of the results are in.
My parents arrived an hour ago so I've been giving them the "tour". I'll sign off now and update again later.
Dr. Smallfield reiterated Tom's improved health and seemed impressed with how he looked and how much he had walked. Everything he does requires assistance though so that pretty much means he could not be left alone. Fortunately, his aunt is available to help next week but it takes a lot of work to help him. I also am concerned with continued PT which he can get with some assistance with home health but I really want him to have a drill sargent. (I know that sounds mean but he needs to be as strong as he possibly can before surgery).
I mentioned in a previous post that Cathy put together a list of blessings we had received since arriving at UAB. I need to add to it but Dr. Covington was reading it this morning and announced "I made the blessings list". The docs got a kick out of the fact that the list referred to him as "Doogie Covington". He is very young (28 I think)! His nurse today was looking to see if she was on the blessings list so I guess I better add everyone so they will continue to take good care of Tom - don't want to make anyone mad.
I raised my concern about the meds Tom is getting via IV and the docs are already beginning to reduce those. Tom's iron level is really, really low so they've started an iron supplement. The electro-cardiogram test was not done last week so it is scheduled for 1 pm today. Hopefully this will be the last of the tests and the team won't be meeting until all of the results are in.
My parents arrived an hour ago so I've been giving them the "tour". I'll sign off now and update again later.
Sunday, October 16, 2011
Normal!
Dr. Patel walked in this morning and asked Tom if he felt as good as his numbers showed. His kidneys are now normal - and not even at the high end of normal. They are letting Tom have some additional fluids and stopping one of his meds.
The on-call doc came in later and reiterated that Tom was doing well. They did give him some magnesium via IV this morning but that is it. Tom had a good breakfast and lunch and has walked the "big lap" for the first time. He is currently sleeping but I'm getting ready to wake him up so he can walk again. I'd like him to walk the big lap 4 times today but will be happy with three. Tom would really like to take a shower so we might attempt that this evening. It's beautiful in Birmingham today so maybe I'll locate a wheelchair and we can go outside.
Debbie left about an hour ago so it's just us for tonight. It was so good to have her here. She is so patient with Tom. I'm hoping to squeeze in a nap this afternoon, I was up with Tom a lot last night. I really want him to be up in his chair tomorrow morning before the first doc walks in so we may be turning in early. Tomorrow will be a stressful day waiting for the meeting of the transplant team tomorrow evening. I'm anxious to see my parents too.
Please pray for the team as they make their decisions and that they will make the right decision for Tom.
The on-call doc came in later and reiterated that Tom was doing well. They did give him some magnesium via IV this morning but that is it. Tom had a good breakfast and lunch and has walked the "big lap" for the first time. He is currently sleeping but I'm getting ready to wake him up so he can walk again. I'd like him to walk the big lap 4 times today but will be happy with three. Tom would really like to take a shower so we might attempt that this evening. It's beautiful in Birmingham today so maybe I'll locate a wheelchair and we can go outside.
Debbie left about an hour ago so it's just us for tonight. It was so good to have her here. She is so patient with Tom. I'm hoping to squeeze in a nap this afternoon, I was up with Tom a lot last night. I really want him to be up in his chair tomorrow morning before the first doc walks in so we may be turning in early. Tomorrow will be a stressful day waiting for the meeting of the transplant team tomorrow evening. I'm anxious to see my parents too.
Please pray for the team as they make their decisions and that they will make the right decision for Tom.
Saturday, October 15, 2011
SATURDAY
A week ago, Tom arrived at UAB. Today he walked three laps in the hall! What a miracle that he is doing so well! Not much of anything happened today. Tom spent a great deal of the day sitting in his chair and walking. He ate really well too!
A co-worker of mine (Matt) dropped by this evening with a "care package" from home. It included slippers for Tom, a fleece jacket for me, an extension cord and our mail for the week! It was good to see a "face from home"
Debbie and I got the munchies this afternoon but all of the gift shops and cafeteria's were closed. She set out to find the CVS pharmacy near the hospital and then stopped at Mellow Mushroom for some dinner. It was nice to have non-cafeteria food today!
Tom continues to receive albumin and lasix via IV for the swelling (which is getting better) and a variety of meds in pill form. The on-call doc mentioned all of the blood Tom had received this week - they are still wondering why his red blood cell count keeps dropping. It doesn't appear that the blood is pooling anywhere in his system so the doc is thinking it is one of the meds or maybe a combination of meds that might be killing off the red blood cells before they get to the spleen. Anyway, I'm going with that reason because anything else sounds too serious.
Tom received the cutest bouquet of flowers from his aunt, uncle and cousins today. I am attaching a picture below (if you're my Facebook friend, you've already seen them). Anyway, it's nice to have a pet in the room, I guess we'll need to give it a name.
I'm guessing tomorrow will be a lot like today. Debbie will need to head home so it will just be the two of us until my parents arrive on Monday. I hope to get Tom walking even greater distances tomorrow and will do anything and everything to keep my mind off of the decisions being made on Monday.
Please keep praying for Tom.
A co-worker of mine (Matt) dropped by this evening with a "care package" from home. It included slippers for Tom, a fleece jacket for me, an extension cord and our mail for the week! It was good to see a "face from home"
Debbie and I got the munchies this afternoon but all of the gift shops and cafeteria's were closed. She set out to find the CVS pharmacy near the hospital and then stopped at Mellow Mushroom for some dinner. It was nice to have non-cafeteria food today!
Tom continues to receive albumin and lasix via IV for the swelling (which is getting better) and a variety of meds in pill form. The on-call doc mentioned all of the blood Tom had received this week - they are still wondering why his red blood cell count keeps dropping. It doesn't appear that the blood is pooling anywhere in his system so the doc is thinking it is one of the meds or maybe a combination of meds that might be killing off the red blood cells before they get to the spleen. Anyway, I'm going with that reason because anything else sounds too serious.
Tom received the cutest bouquet of flowers from his aunt, uncle and cousins today. I am attaching a picture below (if you're my Facebook friend, you've already seen them). Anyway, it's nice to have a pet in the room, I guess we'll need to give it a name.
I'm guessing tomorrow will be a lot like today. Debbie will need to head home so it will just be the two of us until my parents arrive on Monday. I hope to get Tom walking even greater distances tomorrow and will do anything and everything to keep my mind off of the decisions being made on Monday.
Please keep praying for Tom.
Friday, October 14, 2011
TESTS ARE DONE
At least we think they are. What a day - it took most of it to get the tests. Get up, wait, they come get you, wait, they send you back, wait, come get you again, wait . . . Tom's sister Debbie arrived today (yipee) and she went with Tom to the nuclear cardiac test where they image the heart in slices. Since she is in radiology tech school it was a little "extra credit". I know it made Tom feel better to have her there.
Cathy has gone home to spend some time with her husband, Dave. I feel like we've hogged all of her time but she has been such a blessing to have here.
We didn't see any more docs after my earlier post today; they're continuing to say things are still good. Tom was up a lot today so he is tired but walked a good distance with physical therapy. He also made a lap up to and around the nurses station this evening so he's making good progress. He will have physical therapy tomorrow but there should be nothing else going on so that will give us lots of time to walk. By Monday morning, I want there to be no question in Dr. Dubay's mind that Tom is strong enough for the surgery.
Debbie and I will both stay with Tom in his room tonight so I'm preparing her for what's ahead. It's not a really restful nights sleep so you just sleep when you can. It really depends on what medications he gets. He's kind of behind on meds because he was gone so much today and for the first few hours this morning was not allowed to have any food or beverage.
There may be just an evening post tomorrow unless there is something exciting to share. Just keep praying!
Cathy has gone home to spend some time with her husband, Dave. I feel like we've hogged all of her time but she has been such a blessing to have here.
We didn't see any more docs after my earlier post today; they're continuing to say things are still good. Tom was up a lot today so he is tired but walked a good distance with physical therapy. He also made a lap up to and around the nurses station this evening so he's making good progress. He will have physical therapy tomorrow but there should be nothing else going on so that will give us lots of time to walk. By Monday morning, I want there to be no question in Dr. Dubay's mind that Tom is strong enough for the surgery.
Debbie and I will both stay with Tom in his room tonight so I'm preparing her for what's ahead. It's not a really restful nights sleep so you just sleep when you can. It really depends on what medications he gets. He's kind of behind on meds because he was gone so much today and for the first few hours this morning was not allowed to have any food or beverage.
There may be just an evening post tomorrow unless there is something exciting to share. Just keep praying!
TODAY'S PLAN
Tom's final test is scheduled for 9:30 this morning. It is the echocardiogram. Then, unless they want to see something different, we wait.
Dr. Covington (my new favorite doc) came in early this morning and said things are still progressing with the transplant eval. He continues to say that everything looks positive. I told him what Dr. Dubay said about increasing Tom's strength and my concern that Tom continues to receive blood (2 units last night) and albumin which are IV meds and if we are "sent home" for a couple of weeks for Tom to get stronger, how will Tom get these things? Dr. Covington said that he is a bit troubled as to why so much blood is needed as well and said they would arrange for care if we were sent home. I don't understand why they would send him back to Nashville when he could stay here - which is what I prefer at this point. Dr. C said he and Dr. Dubay discussed Tom's case yesterday - so if he's still positive, we need to be also. I asked if he thought Tom would be considered in the conference Monday night, he said he wasn't sure. Now that we know all of the tests will be completed, I feel certain they will at least discuss his case. PRAY PRAY PRAY that we'll get in.
Tom will be working like crazy this weekend to get stronger. We know we will be here all weekend so that's all we need to focus on.
Dr. Covington said that Tom's kidneys are back to normal - PRAISE THE LORD! I didn't doubt this - I knew with the proper care they would come around. Tom still has a lot of fluid in his legs which gets worse as he is up moving around (gravity) so this is an added challenge. But moving is good to get the fluid moving and hopefully working it's way out. Tom is very, very sore and we're just telling him he has to push through it which is tough when you already don't feel good.
Cathy has created a long list of blessings we have received since arriving here. We will focus on it when we get scared or concerned. It's amazing all of the things that have happened for Tom and us - including the head of Psychology who was standing in line behind Cathy and offering to pay for our breakfast at Starbucks yesterday morning!
Thank you faithful followers.
Dr. Covington (my new favorite doc) came in early this morning and said things are still progressing with the transplant eval. He continues to say that everything looks positive. I told him what Dr. Dubay said about increasing Tom's strength and my concern that Tom continues to receive blood (2 units last night) and albumin which are IV meds and if we are "sent home" for a couple of weeks for Tom to get stronger, how will Tom get these things? Dr. Covington said that he is a bit troubled as to why so much blood is needed as well and said they would arrange for care if we were sent home. I don't understand why they would send him back to Nashville when he could stay here - which is what I prefer at this point. Dr. C said he and Dr. Dubay discussed Tom's case yesterday - so if he's still positive, we need to be also. I asked if he thought Tom would be considered in the conference Monday night, he said he wasn't sure. Now that we know all of the tests will be completed, I feel certain they will at least discuss his case. PRAY PRAY PRAY that we'll get in.
Tom will be working like crazy this weekend to get stronger. We know we will be here all weekend so that's all we need to focus on.
Dr. Covington said that Tom's kidneys are back to normal - PRAISE THE LORD! I didn't doubt this - I knew with the proper care they would come around. Tom still has a lot of fluid in his legs which gets worse as he is up moving around (gravity) so this is an added challenge. But moving is good to get the fluid moving and hopefully working it's way out. Tom is very, very sore and we're just telling him he has to push through it which is tough when you already don't feel good.
Cathy has created a long list of blessings we have received since arriving here. We will focus on it when we get scared or concerned. It's amazing all of the things that have happened for Tom and us - including the head of Psychology who was standing in line behind Cathy and offering to pay for our breakfast at Starbucks yesterday morning!
Thank you faithful followers.
Thursday, October 13, 2011
Ugh
We met Dr. Dubay today. He reiterated that Tom is the ideal candidate for a transplant however, he really wants Tom to be much stronger than he is right now. Tom walked a lot today (as requested by Dr. Covington). He also sat up a lot. Dr. Dubay ordered an abdominal ultrasound and a CAT scan, both of which have been completed. Tom was also supposed to have an echocardiogram but that didn't get done. There is also the stress test that still needs to be performed. Tom really pushed himself today and Cathy and I are going to do our best to prove to Dr. Dubay that Tom is strong enough. We desperately need prayers for this and it could keep Tom off the list right now.
So I'm stressed and scared all over again.
So I'm stressed and scared all over again.
Glimmer of hope
Just a quick update with some info from this morning . . .
Dr. Covington said Tom's creatinine (kidney function) is way down and is almost back to normal. This is great news.
Dr. Smallfield came by and said that he's been a looking at some of the test results so far and doesn't see anything that would preclude Tom from being accepted in the program. We are very hopeful about that. Hereiterated that Tom needed to move so he has spent about 2 hours in the chair so far and we walked out of his room and over to a breezeway that has a really nice view. He sat there for a while and then walked back. He is motivated!!!
We're hoping for two things today, that Tom has the final tests and that we will meet Dr. Dubay, the surgeon.
Dr. Covington said Tom's creatinine (kidney function) is way down and is almost back to normal. This is great news.
Dr. Smallfield came by and said that he's been a looking at some of the test results so far and doesn't see anything that would preclude Tom from being accepted in the program. We are very hopeful about that. Hereiterated that Tom needed to move so he has spent about 2 hours in the chair so far and we walked out of his room and over to a breezeway that has a really nice view. He sat there for a while and then walked back. He is motivated!!!
We're hoping for two things today, that Tom has the final tests and that we will meet Dr. Dubay, the surgeon.
Wednesday, October 12, 2011
READY FOR REST
Tom's had quite a busy day today with more tests. He really didn't get any kind of rest during the day and if there was even an opportunity to do so, we made him eat or answer questions for one of his tests. But . . . we're pretty much done with all testing except the stress test which he will have tomorrow or Friday. At least, I think that's the end of the tests for the moment. He will continue to have lab work done weekly.
We did not meet Dr. Dubay today but that's OK. I'm sure we'll meet him eventually. You never know when those guys are going to show up!
The seminar I attended today was very informative. I have been reading and researching on the Internet this evening. There is so much info. There were 9 potential candidates in the class. The consultant said they were evaluating 12 candidates this week. We also know that there was another transplant that took place today. That's 2 in 3 days! And that's just for livers. They transplant everything here. There is so much demand and so little supply. If you haven't committed to organ donation, please consider it!
So, all in all it was a good day. It's nice to be busy and keep that little voice of uncertainty from taking over all of my thoughts.
Cathy was gracious enough to do some laundry for me this evening. I wasn't sure if I had enough clean clothes to get me through the weekend. She was only planning to spend a couple of days and she's been here all week! I don't know what I would have done without her. My parents are lined up for most of next week, followed by Tom's sister, Debbie. I'll be back next weekend and Tom's Aunt will stay the following week.
We ask that you continue to pray for Tom, the surgeons and transplant team members. We're still hoping they will decide in Tom's favor on Monday night. We may not know until Tuesday or Wednesday if he's on the list. I'm hoping to know by Tuesday morning since we are on-site.
We did not meet Dr. Dubay today but that's OK. I'm sure we'll meet him eventually. You never know when those guys are going to show up!
The seminar I attended today was very informative. I have been reading and researching on the Internet this evening. There is so much info. There were 9 potential candidates in the class. The consultant said they were evaluating 12 candidates this week. We also know that there was another transplant that took place today. That's 2 in 3 days! And that's just for livers. They transplant everything here. There is so much demand and so little supply. If you haven't committed to organ donation, please consider it!
So, all in all it was a good day. It's nice to be busy and keep that little voice of uncertainty from taking over all of my thoughts.
Cathy was gracious enough to do some laundry for me this evening. I wasn't sure if I had enough clean clothes to get me through the weekend. She was only planning to spend a couple of days and she's been here all week! I don't know what I would have done without her. My parents are lined up for most of next week, followed by Tom's sister, Debbie. I'll be back next weekend and Tom's Aunt will stay the following week.
We ask that you continue to pray for Tom, the surgeons and transplant team members. We're still hoping they will decide in Tom's favor on Monday night. We may not know until Tuesday or Wednesday if he's on the list. I'm hoping to know by Tuesday morning since we are on-site.
UP AND AT 'EM
This morning we were up and moving early. By 8 am, Tom and completed a breathing session and was sitting in the chair for the first of 2-3 one-hour sessions today. He ate a good breakfast too. Just after we got him back in bed, the neuro-psych tech came in and performed a memory test. Tom did so good, I was super-stressed. Obviously my memory stinks (I already knew that), his is great. During the testing, two of his doctors came in along with PT. So, as usual, it's a pretty busy morning. Tom is now resting. We expect PT back shortly and he has another test to complete today too. Cathy is going to work with him on that while I am at the Transplant meeting at noon.
Tom received a couple of units of blood last night. Dr. Smallfield said he is getting better and may go home to wait for a transplant - but he's not ready yet. We are supposed to meet Dr. DuBay, another transplant surgeon today and Tom still has the heart/lung/breathing tests so maybe those will be today also.
I keep trying to read into what everyone is saying and doing whether Tom is "in the program" or not. It is so difficult not to. I know Tom is scared but he has such a good attitude also.
We just received a visit from the pastor of the church that Cathy's mother-in-law attends. Gods hand continues to reach out and cover us in prayer from so many people.
Please pray for Dr. Gray and Dr. DuBay. These are "our" transplant surgeons.
Tom received a couple of units of blood last night. Dr. Smallfield said he is getting better and may go home to wait for a transplant - but he's not ready yet. We are supposed to meet Dr. DuBay, another transplant surgeon today and Tom still has the heart/lung/breathing tests so maybe those will be today also.
I keep trying to read into what everyone is saying and doing whether Tom is "in the program" or not. It is so difficult not to. I know Tom is scared but he has such a good attitude also.
We just received a visit from the pastor of the church that Cathy's mother-in-law attends. Gods hand continues to reach out and cover us in prayer from so many people.
Please pray for Dr. Gray and Dr. DuBay. These are "our" transplant surgeons.
Tuesday, October 11, 2011
BUSY BUSY BUSY
We had a visit from the Transplant coordinator today. She provided lots of information on the surgery, recovery, follow-up appointments, etc. It IS overwhelming but I am really thankful it is happening so fast.
Cathy took all the notes so I'll summarize as much as possible. Assuming Tom is approved for a transplant, he may, due to current health issues, need to remain hospitalized while waiting for a liver. It is possible that he could be well enough to go home and wait. Once a liver is available, they do lots of tests on it and ask lots of questions about the health of the donor and then pull together all of their resources. She said that a lot of times, a liver will become available and the recipient will have surgery the following day. That means we would have time to get here if we're at home. The surgery is normally 6 to 8 hours. She told us about the incision, drainage, etc. I won't go into all of that.
After surgery, Tom would remain hospitalized for 7-10 days and then move to a "townhouse" on campus for 2 - 3 weeks. After that, Tom would come back to the clinic about once a month and as he improves, those appointments would spread out.
Each Monday, the transplant team here meets and decides if the candidates are going to be considered for a transplant. The coordinator thought we would know about Tom on Monday.
Most of UAB's organs come from in-house, but he would also be on a national registry. Tom will be assigned a MELD score which is based on his lab results. So as he improves, the MELD score will probably go down. The higher the MELD score, the higher he is on the list.
The psychiatric team came in today also and asked a bunch of questions. Tom has several tests that he needs to take over the next few days as part of the evaluation process. He will also have stress tests on his heart and breathing tests on his lungs. They will do EKG's, ultrasounds, and stuff like that as well.
Tomorrow at noon is a class for transplant patients and family members so I hope to be able to attend it.
Everyone that has come in to meet with us today has said Tom needs to eat, breathe (in the incentive spirometer), and move.
We also met with the person who will probably be Tom's surgeon, Dr. Gray. We are very impressed.
Tom is sitting in a chair for a while - he doesn't look happy.
Still lots to deal with. Please keep praying that the staff will accept Tom.
Cathy and I are missing our homes, jobs and friends but we know it is very important for us to be here.
Cathy took all the notes so I'll summarize as much as possible. Assuming Tom is approved for a transplant, he may, due to current health issues, need to remain hospitalized while waiting for a liver. It is possible that he could be well enough to go home and wait. Once a liver is available, they do lots of tests on it and ask lots of questions about the health of the donor and then pull together all of their resources. She said that a lot of times, a liver will become available and the recipient will have surgery the following day. That means we would have time to get here if we're at home. The surgery is normally 6 to 8 hours. She told us about the incision, drainage, etc. I won't go into all of that.
After surgery, Tom would remain hospitalized for 7-10 days and then move to a "townhouse" on campus for 2 - 3 weeks. After that, Tom would come back to the clinic about once a month and as he improves, those appointments would spread out.
Each Monday, the transplant team here meets and decides if the candidates are going to be considered for a transplant. The coordinator thought we would know about Tom on Monday.
Most of UAB's organs come from in-house, but he would also be on a national registry. Tom will be assigned a MELD score which is based on his lab results. So as he improves, the MELD score will probably go down. The higher the MELD score, the higher he is on the list.
The psychiatric team came in today also and asked a bunch of questions. Tom has several tests that he needs to take over the next few days as part of the evaluation process. He will also have stress tests on his heart and breathing tests on his lungs. They will do EKG's, ultrasounds, and stuff like that as well.
Tomorrow at noon is a class for transplant patients and family members so I hope to be able to attend it.
Everyone that has come in to meet with us today has said Tom needs to eat, breathe (in the incentive spirometer), and move.
We also met with the person who will probably be Tom's surgeon, Dr. Gray. We are very impressed.
Tom is sitting in a chair for a while - he doesn't look happy.
Still lots to deal with. Please keep praying that the staff will accept Tom.
Cathy and I are missing our homes, jobs and friends but we know it is very important for us to be here.
HAPPENINGS
Well, it seems 10 am is the magic hour around here. Not that we haven't been busy ALL NIGHT LONG. That's when Dr. Smallfield (our new "man in charge") and physical therapy and the nurses all seem to converge on Tom's room for something or another. The doc asked if the "Transplant Team" had been in to talk to us yet so we're not going anywhere until we see them - I suppose we could be waiting a while. He said Tom would have "testing and evaluations all week". We have no fixed plans on anything so we're just trying to go with the flow.
Tom has been up to sit in the recliner for an hour this morning. He is supposed to do that 2 - 3 times a day. It is work to get him there right now but he's made a lot of progress since yesterday.
We had a visit from a pharmacist today to go over the medications for post-transplant. He mentioned meds that Tom would take for the rest of his life, how important they are and that they can be very expensive. There are 3-25 meds he could be taking! We took the opportunity to grill him on any info he could possibly provide. We primarily asked for time frames. He said the testing is normally about 7 days (he had seen it as few as 3). Then you just wait on the liver. He said that after the surgery, the patient is usually in the hospital 2-3 weeks followed by 2-3 weeks in the "townhome" on campus with outpatient visits.
He also said that patients usually do better if they "crash and burn", get a transplant and then recover as opposed to slowly going downhill over a period of years and then getting the transplant. We are in the "crash and burn" category and they are busting it to get Tom ready for surgery. He also said its almost better for the family too because things just move and there is not a lot of waiting. The surgery itself lasts 6-8 hours!
We're lining up our support teams so Cathy and I can go work a few days in the next couple of weeks. Of course, not knowing when all this will happen makes that really hard. Cathy and I are both so blessed to have wonderful co-workers holding down the fort for us. I think we will be able to prove to the team that Tom has great support but it will help for him to have someone with him at all times. It helps him feel better too.
Cathy has been staying in the attached Marriott Courtyard. She has offered to let me go over and take a shower so I'm really looking forward to doing that sometime today. But not until we wait out the Transplant Team!
Tom has been up to sit in the recliner for an hour this morning. He is supposed to do that 2 - 3 times a day. It is work to get him there right now but he's made a lot of progress since yesterday.
We had a visit from a pharmacist today to go over the medications for post-transplant. He mentioned meds that Tom would take for the rest of his life, how important they are and that they can be very expensive. There are 3-25 meds he could be taking! We took the opportunity to grill him on any info he could possibly provide. We primarily asked for time frames. He said the testing is normally about 7 days (he had seen it as few as 3). Then you just wait on the liver. He said that after the surgery, the patient is usually in the hospital 2-3 weeks followed by 2-3 weeks in the "townhome" on campus with outpatient visits.
He also said that patients usually do better if they "crash and burn", get a transplant and then recover as opposed to slowly going downhill over a period of years and then getting the transplant. We are in the "crash and burn" category and they are busting it to get Tom ready for surgery. He also said its almost better for the family too because things just move and there is not a lot of waiting. The surgery itself lasts 6-8 hours!
We're lining up our support teams so Cathy and I can go work a few days in the next couple of weeks. Of course, not knowing when all this will happen makes that really hard. Cathy and I are both so blessed to have wonderful co-workers holding down the fort for us. I think we will be able to prove to the team that Tom has great support but it will help for him to have someone with him at all times. It helps him feel better too.
Cathy has been staying in the attached Marriott Courtyard. She has offered to let me go over and take a shower so I'm really looking forward to doing that sometime today. But not until we wait out the Transplant Team!
Monday, October 10, 2011
SUPER WONDERFUL HAPPY NEWS
The surgeon said OK!!
He didn't even come in to see Tom either!
Two of the doctors came in to draw some fluid off of his abdomen tonight (FIVE liters) and said they were scheduling some tests for Tom tomorrow. I said, well, the surgeon was supposed to come in and see if Tom would be OK for surgery and we haven't seen him. The doc said they spoke with the surgeon, gave him the info on Tom and the surgeon said go ahead with the evaluation tests!
So, on to the next steps. There will be lots and lots of tests to evaluate him as a candidate for a transplant. God has brought us so far. I can't even begin to tell you how much lighter our hearts are right now. We know there is much ahead. We needlessly spent so much time in worry today but also lots of time in prayer. I need to be sure and read the "Jesus Calling" devotions in the morning instead of late afternoon. TRUST JESUS!!
Tom had physical therapy and occupational therapy today and will continue as time permits. One of the things the doctor said this morning was Tom needs to get moving so he was on his feet for a brief time this morning. He has eaten better today but we're pushing him to eat even more. There is a refrigerator where we can store extra food so we've stockpiled some snacks for him.
Cathy is going to continue to stay to confirm for the team that Tom has support. The doc said one is good, two is better. I wanted to tell him we have lots more if they are needed.
We had a surprise visit today from Cathy's mother-in-law who lives here in Birmingham. She is such a gracious lady. We both broke down in tears when we saw her. She told us she added Tom to her Sunday School prayer list so that surely took us over the top!
Please pray for Tom. He will have a very busy day tomorrow. There will be judgement every place he goes. Some testing is medical, other tests will require him to "perform" and he is still very sick. Cathy and I will no doubt spend a lot of time in prayer too. From Tom's room we have a direct view of the LifeFlight landing pad. There is a LOT of activity there. I find myself saying prayers for those patients and their families, knowing some of the fear and uncertainty they are feeling. Sometimes its easier to pray for them.
Thank you prayer warriors. Praise God!!
He didn't even come in to see Tom either!
Two of the doctors came in to draw some fluid off of his abdomen tonight (FIVE liters) and said they were scheduling some tests for Tom tomorrow. I said, well, the surgeon was supposed to come in and see if Tom would be OK for surgery and we haven't seen him. The doc said they spoke with the surgeon, gave him the info on Tom and the surgeon said go ahead with the evaluation tests!
So, on to the next steps. There will be lots and lots of tests to evaluate him as a candidate for a transplant. God has brought us so far. I can't even begin to tell you how much lighter our hearts are right now. We know there is much ahead. We needlessly spent so much time in worry today but also lots of time in prayer. I need to be sure and read the "Jesus Calling" devotions in the morning instead of late afternoon. TRUST JESUS!!
Tom had physical therapy and occupational therapy today and will continue as time permits. One of the things the doctor said this morning was Tom needs to get moving so he was on his feet for a brief time this morning. He has eaten better today but we're pushing him to eat even more. There is a refrigerator where we can store extra food so we've stockpiled some snacks for him.
Cathy is going to continue to stay to confirm for the team that Tom has support. The doc said one is good, two is better. I wanted to tell him we have lots more if they are needed.
We had a surprise visit today from Cathy's mother-in-law who lives here in Birmingham. She is such a gracious lady. We both broke down in tears when we saw her. She told us she added Tom to her Sunday School prayer list so that surely took us over the top!
Please pray for Tom. He will have a very busy day tomorrow. There will be judgement every place he goes. Some testing is medical, other tests will require him to "perform" and he is still very sick. Cathy and I will no doubt spend a lot of time in prayer too. From Tom's room we have a direct view of the LifeFlight landing pad. There is a LOT of activity there. I find myself saying prayers for those patients and their families, knowing some of the fear and uncertainty they are feeling. Sometimes its easier to pray for them.
Thank you prayer warriors. Praise God!!
Busy day
Pray, pray, pray
Tom will be evaluated by a surgeon today to determine whether he can handle the surgery. This is a show stopping evaluation so please pray that this will go well. Just so you know this is based on the surgeons availability so it could be midnight before he comes by and may not make it today.
There is good news on the kidneys - his creatinine is down again today. Having the kidneys is good working order helps support the liver so the docs are pleased about that. The doctors seem to think that when they pulled 7-8 liters of fluid from his abdomen last weekend inthat it really upset the kidneys. So its been crucial to get them in good working order before anything else can happen.
They gave Tom a unit of blood this morning and are talking about removing some more fluid from his abdomen today.
Support is cry important so Cathy is staying with me so the docs know that Tom has a good support team. I am so relieved she is here.
After the surgeon gives his ok, lots of testing will start - putting Tom through the ringer. Pray that he will persevere.
More later.
Tom will be evaluated by a surgeon today to determine whether he can handle the surgery. This is a show stopping evaluation so please pray that this will go well. Just so you know this is based on the surgeons availability so it could be midnight before he comes by and may not make it today.
There is good news on the kidneys - his creatinine is down again today. Having the kidneys is good working order helps support the liver so the docs are pleased about that. The doctors seem to think that when they pulled 7-8 liters of fluid from his abdomen last weekend inthat it really upset the kidneys. So its been crucial to get them in good working order before anything else can happen.
They gave Tom a unit of blood this morning and are talking about removing some more fluid from his abdomen today.
Support is cry important so Cathy is staying with me so the docs know that Tom has a good support team. I am so relieved she is here.
After the surgeon gives his ok, lots of testing will start - putting Tom through the ringer. Pray that he will persevere.
More later.
Sunday, October 9, 2011
UAB
What's UAB you ask? University of Alabama Medical Center in Birmingham. Tom arrived here last night. He is being evaluated for their liver transplant program. It seems that his liver is just not recovering like it needs to. It has been an emotional roller coaster this week waiting to determine where he might go. I must say that this is a wonderful facility. Tom got here about 8:30 last night and by 1:30 am they had performed an X-ray and pulled 2 liters of fluid from Tom's abdomen. Tom has really been struggling with fluid retention the past few weeks which essentially landed him in the hospital 2 weeks ago. The docs determined that the liver was just not doing enough and suggested this plan. Tom will be tested and evaluated over the next days or weeks or whatever (we don't really know) and we're praying will remain until he receives a new liver if that is what he needs.
We continue to be blessed with the support of wonderful family and friends. Tom's friend Dennis rode in the ambulance with Tom while Dennis' wife, Diane followed behind. Toms sister Cathy met them here and spent the night. After spending 13 nights at the hospital with Tom, I spent last night at home and brought the puppies with me. Toms sister Debbie and our niece Meagan met me here and are going to care for the puppies for us. Meagan and her husband have 2 dachshunds of their own along with 2 children so they will have their hands full. Although they have sent me a couple of pictures and I'm wondering if my dogs are going to want to come home - they're looking pretty comfortable.
Toms room here is nice and large. There is plenty of seating, room to move around, a good tv remote and his and her closets! I'll probably stay here most of the week but will address that day by day. They've taken very good care of him so far.
Were asking for prayers that Tom will be accepted for a transplant (if that is what he needs) or whatever it will take for him to be healed.
I'll continue to update the blog with info as I get it.
We continue to be blessed with the support of wonderful family and friends. Tom's friend Dennis rode in the ambulance with Tom while Dennis' wife, Diane followed behind. Toms sister Cathy met them here and spent the night. After spending 13 nights at the hospital with Tom, I spent last night at home and brought the puppies with me. Toms sister Debbie and our niece Meagan met me here and are going to care for the puppies for us. Meagan and her husband have 2 dachshunds of their own along with 2 children so they will have their hands full. Although they have sent me a couple of pictures and I'm wondering if my dogs are going to want to come home - they're looking pretty comfortable.
Toms room here is nice and large. There is plenty of seating, room to move around, a good tv remote and his and her closets! I'll probably stay here most of the week but will address that day by day. They've taken very good care of him so far.
Were asking for prayers that Tom will be accepted for a transplant (if that is what he needs) or whatever it will take for him to be healed.
I'll continue to update the blog with info as I get it.
Wednesday, October 5, 2011
Please pray
Yes, I know its been a while and Tom had been doing really well. But he's had quite a setback and is in the hospital again. At this point, please pray for healing, for the doctors to make the right decisions, for peace and patience. There has been slight improvement but we need much more. I don't want to go into details. I will do my best to keep posting as time permits. Tom is not answering his phone, he needs to rest and save his energy.
For those of you faithful enough to check the blog from time to time - thank you.
For those of you faithful enough to check the blog from time to time - thank you.
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