I must say I was dreading coming to the hospital this morning. I was here until about 11 pm last night. Tom was sleeping when I left. I worried about him all night.
When I came in this morning, Tom was sitting up in bed eating breakfast. We both said "hey" and I asked him how he was doing. He told me he was feeling pretty good and that his ammonia level was back to normal. I just started crying. I was so relieved. The nurse told me he slept all night.
It's been a pretty good day. Tom's good friend Dennis was here for a good part of the day which was great for both of us. I took advantage of the time and headed back home and put away the few Christmas decorations we had up. I also cleaned out the fireplace and set it up for a new fire that we can enjoy when Tom comes home - it's supposed to get pretty cold here this week. The puppies enjoyed a nice day to run around in the yard.
Tom and I ordered dinner from Outback Steakhouse tonight. The break from hospital food was great! I will hang around until midnight and then head home. I could really use a good nights sleep.
We missed celebrating Christmas with my family in Memphis today but we all survived. I stayed pretty busy so which helped. Once Tom comes home we'll arrange to get together and exchange our gifts.
I'm really hoping Tom will want to get up and move around tomorrow. I think that would make him feel a lot better. His nurse took really good care of him today so that helped all of us.
Tom is back on the IV antibiotic he was on when he first got here (the same one he was getting at home). His white blood cell count went down to 14! His red blood cell count is low and if it falls any lower, they will give him some blood tomorrow. I asked for the results of last nights chest X-ray. The nurse told me "unofficially" that the record said "unremarkable". Really!?! What does that even mean? Could they be more ambiguous? The nurse said they didn't find anything so that is good news.
We're looking forward to an uneventful New Years Day full of football. We hope you all have a safe, happy, and healthy 2012!
Love,
Tom and Jeanne
Saturday, December 31, 2011
Friday, December 30, 2011
BANGING MY HEAD AGAINST THE WALL
No one deserves this!!!
I keep thinking I am going to be able to write something happy and positive - this is not one of those days.
Dr. Dunn was later than normal this morning so I missed his visit. Tom's initial bloodwork from this morning showed his white blood cell count (WBC) to be high (17, normal is 10). This usually indicates some kind of infection. My money is on the leg or the bladder. They have sent more blood and urine to the lab for tests and started Tom on an antibiotic. He's still lethargic so they are going to give him more of the medicine to help with that.
Tom also told me that Dr. Dunn said he was going to discharge Tom today but he can't now because of the infection. Note to medical personnel out there - do not EVER tell a patient you were going to let them go home - especially a patient that has been in the hospital over Christmas and will now be there over New Years. Bad, bad move.
OK, I've vented.
It appeared that Tom ate breakfast today but kept falling asleep when I asked about lunch. In fact, he was asleep when I left so he will probably not be too happy with me for sneaking out. Tom is having such a hard time being in the hospital - he is lonely at times and bored. He can't seem to catch a break. He doesn't even want to hear encouraging words from anyone - they are really difficult to believe right now.
I'm re-thinking my decision to go to Memphis. I'll make the call tonight after I see how Tom is doing. As my Mom says, I won't have a good time if I spend it all worrying about him - which is true - and I will worry!
It seems like more of the fluid should be gone after all of this time in the hospital getting meds. I know the process is slow but it seems like it's been better than this in the past. Tom is getting up some but mainly to go to the bathroom and that's it. I tried suggesting he sit in the chair for a while but he said it hurt too much. It's probably better if someone is there just in case he gets too uncomfortable. I really would like to try and get him out to walk in the halls a little but he hasn't felt like that either. I think once he is less lethargic, he will feel like moving around more - I hope so anyway.
So, I'm still praying - I hope you are also.
Thanks
I keep thinking I am going to be able to write something happy and positive - this is not one of those days.
Dr. Dunn was later than normal this morning so I missed his visit. Tom's initial bloodwork from this morning showed his white blood cell count (WBC) to be high (17, normal is 10). This usually indicates some kind of infection. My money is on the leg or the bladder. They have sent more blood and urine to the lab for tests and started Tom on an antibiotic. He's still lethargic so they are going to give him more of the medicine to help with that.
Tom also told me that Dr. Dunn said he was going to discharge Tom today but he can't now because of the infection. Note to medical personnel out there - do not EVER tell a patient you were going to let them go home - especially a patient that has been in the hospital over Christmas and will now be there over New Years. Bad, bad move.
OK, I've vented.
It appeared that Tom ate breakfast today but kept falling asleep when I asked about lunch. In fact, he was asleep when I left so he will probably not be too happy with me for sneaking out. Tom is having such a hard time being in the hospital - he is lonely at times and bored. He can't seem to catch a break. He doesn't even want to hear encouraging words from anyone - they are really difficult to believe right now.
I'm re-thinking my decision to go to Memphis. I'll make the call tonight after I see how Tom is doing. As my Mom says, I won't have a good time if I spend it all worrying about him - which is true - and I will worry!
It seems like more of the fluid should be gone after all of this time in the hospital getting meds. I know the process is slow but it seems like it's been better than this in the past. Tom is getting up some but mainly to go to the bathroom and that's it. I tried suggesting he sit in the chair for a while but he said it hurt too much. It's probably better if someone is there just in case he gets too uncomfortable. I really would like to try and get him out to walk in the halls a little but he hasn't felt like that either. I think once he is less lethargic, he will feel like moving around more - I hope so anyway.
So, I'm still praying - I hope you are also.
Thanks
Thursday, December 29, 2011
Rough day
Today started out with Tom tugging on his cath, causing more bleeding. They finally just removed it which brings on new challenges. He couldn't keep his eyes open this morning so I hung out and managed to get him to tell me what he wanted for breakfast. When I got back at lunch, his breakfast tray was in the room but had not been touched. His room was a mess so I spent time cleaning up, emptying the trash and cleaning the bathroom. Then the vertically challenged housekeeping staff member came in and asked me if I would unlock the paper towel dispenser for her. It's so nice to be needed.
I had asked his nurse this morning about the constant sleepiness, his ammonia level (because Tom has been lethargic again) and requested that he change the bandages on Tom's leg. At lunch, he told me that Tom's ammonia level was high, his potassium level was a little high and they were changing some of his meds. He had not "had a chance" to change the bandages (I understand that but it didn't make me very happy). I didn't think Tom had been taking all of the prescribed ammonia medicine but when I asked him about it he told me it was "fine". I have asked the nursing staff to please be sure they stick around and make sure he takes all of that med. He does really well with the other meds. He's mad at me for saying something about it.
This evening things are slightly better. His bandages have been changed, I only needed to do minor cleaning and he's eating dinner as I write this. He told me Dr. Dunn has taken him off the IV meds so I'll ask the nurse about that. I thought they would give him some blood today but that didn't happen. They are supposed to check everything tomorrow so maybe someone can give me the results then. It's really a struggle to get information out of the staff this time.
I think the staff is assuming Tom is ok on his own. Even though they have the bed alarm on and he may call them when he needs to get up, they are not as responsive as they need to be. Tom said they are doing some kind of group thing where he gets a different nurse every couple of hours. I don't understand that at all.
Tom is taking his frustrations out on me (which is fine) and the cafeteria people. I admit, they are very slow and they will tend to leave his tray on the cart outside his door. He may end up with two dinners tonight. While he was on the phone complaining about not receiving his meal, it was placed on the cart outside. I tried to tell him not to make the food people mad - that could turn out bad!
Since it doesn't look like Tom is getting out of here, I am making plans to head to Memphis on Saturday to celebrate Christmas with my side of our family. I haven't told Tom yet and I'm trying to arrange for some of his friends to hang out with him for a while until I get back. It will be a very quick trip. I know he will be disappointed to miss so I am not making a big deal of it. I'll be back in plenty of time to ring in the new year. Maybe we can go outside at midnight and technically won't be "in" the hospital!! I'll probably pick up some good food from a nice restaurant for us.
Still waiting on the night shift nurse to come in so I can ask all my questions and really make Tom mad. He is now eating dinner number two.
Good night!
I had asked his nurse this morning about the constant sleepiness, his ammonia level (because Tom has been lethargic again) and requested that he change the bandages on Tom's leg. At lunch, he told me that Tom's ammonia level was high, his potassium level was a little high and they were changing some of his meds. He had not "had a chance" to change the bandages (I understand that but it didn't make me very happy). I didn't think Tom had been taking all of the prescribed ammonia medicine but when I asked him about it he told me it was "fine". I have asked the nursing staff to please be sure they stick around and make sure he takes all of that med. He does really well with the other meds. He's mad at me for saying something about it.
This evening things are slightly better. His bandages have been changed, I only needed to do minor cleaning and he's eating dinner as I write this. He told me Dr. Dunn has taken him off the IV meds so I'll ask the nurse about that. I thought they would give him some blood today but that didn't happen. They are supposed to check everything tomorrow so maybe someone can give me the results then. It's really a struggle to get information out of the staff this time.
I think the staff is assuming Tom is ok on his own. Even though they have the bed alarm on and he may call them when he needs to get up, they are not as responsive as they need to be. Tom said they are doing some kind of group thing where he gets a different nurse every couple of hours. I don't understand that at all.
Tom is taking his frustrations out on me (which is fine) and the cafeteria people. I admit, they are very slow and they will tend to leave his tray on the cart outside his door. He may end up with two dinners tonight. While he was on the phone complaining about not receiving his meal, it was placed on the cart outside. I tried to tell him not to make the food people mad - that could turn out bad!
Since it doesn't look like Tom is getting out of here, I am making plans to head to Memphis on Saturday to celebrate Christmas with my side of our family. I haven't told Tom yet and I'm trying to arrange for some of his friends to hang out with him for a while until I get back. It will be a very quick trip. I know he will be disappointed to miss so I am not making a big deal of it. I'll be back in plenty of time to ring in the new year. Maybe we can go outside at midnight and technically won't be "in" the hospital!! I'll probably pick up some good food from a nice restaurant for us.
Still waiting on the night shift nurse to come in so I can ask all my questions and really make Tom mad. He is now eating dinner number two.
Good night!
Wednesday, December 28, 2011
IMPROVEMENT
According to Dr. Dunn, there is improvement! Tom's legs and feet looked better this morning. I guess the IV lasix plus the two oral diuretics are moving some fluid. The doc asked Tom if he needed anything - Tom said "to go home". Dr. Dunn said he wasn't the "go home" doctor. He was going to find out today when Dr. Rutland was going to be back. Tom was also going to talk to the on-call doc about going home.
Tom currently has a cath. It is very convenient since he is on so much of the diuretic medication. If he goes home, that comes out because there is such a big risk of infection. It's something to consider because Tom is not able to jump up out of the chair and run to the bathroom. So, maybe another day or two in the hospital and they can cut back on some of the meds and Tom can go home. It may be up to Tom at that point. He told me he got up and walked around his room and did some exercises yesterday so hopefully moving around is helping get the fluid out too.
Dr. Dunn is very pleased with Tom's progress and said his kidneys are doing well. He looked at the potassium level and it was fine. I'll check with the nurses about all the rest of the levels - Tom was supposed to get a pretty full lab work-up today. Tom is sleepy all the time. I don't know if that is the new med or what. He can fall asleep if you're having a conversation with him and I think he was about to fall asleep while eating breakfast this morning. He said he slept some last night but I'm sure it's wasn't "good" sleep.
That's about all I know for now. There is still little or no wireless coverage at the hospital. I guess their IT department is on vacation for the rest of the year!
Tom currently has a cath. It is very convenient since he is on so much of the diuretic medication. If he goes home, that comes out because there is such a big risk of infection. It's something to consider because Tom is not able to jump up out of the chair and run to the bathroom. So, maybe another day or two in the hospital and they can cut back on some of the meds and Tom can go home. It may be up to Tom at that point. He told me he got up and walked around his room and did some exercises yesterday so hopefully moving around is helping get the fluid out too.
Dr. Dunn is very pleased with Tom's progress and said his kidneys are doing well. He looked at the potassium level and it was fine. I'll check with the nurses about all the rest of the levels - Tom was supposed to get a pretty full lab work-up today. Tom is sleepy all the time. I don't know if that is the new med or what. He can fall asleep if you're having a conversation with him and I think he was about to fall asleep while eating breakfast this morning. He said he slept some last night but I'm sure it's wasn't "good" sleep.
That's about all I know for now. There is still little or no wireless coverage at the hospital. I guess their IT department is on vacation for the rest of the year!
Tuesday, December 27, 2011
STILL HERE
In the hospital . . . that is. Sorry for no update yesterday - not that there was anything to report. The wireless Internet coverage in the hospital has not been very good during this stay and was nonexistant yesterday. I was going to post an update last night when I got home but then I get busy with the puppies and doing stuff and I just forget!!
Dr. Dunn, the kidney doctor, came in this morning and asked when Dr. Rutland was going to let Tom go home. I guess he sees no need for Tom to stay in the hospital. He doesn't even think there is a need for IV lasix and that the oral form will do just fine. The process is slower than we would like. Tom said it's difficult for him to get around with his legs still so swollen. At times it doesn't even seem like the swelling has gone down at all but it will leave his legs/feet last. Tom was up once overnight (he said). Dr. Dunn asked him about physical therapy - which Tom has not had during his stay. Tom didn't have anything good to say about the hospital PT people. I think every little bit helps but that's just my opinion. My biggest worry with him coming home is falling. It is so easy for him to lose his balance and he gets frustrated using the walker too. Dr. Dunn was going to talk to Dr. Rutland today so maybe we'll get some good news.
Tom was a bit lethargic last night. They didn't give him any blood yesterday and were going to watch and see if the counts came up on their own. I hope I am there today when Dr. Rutland comes by. I want to ask him about all of the other things - electrolytes and such just to make sure nothing else is wrong. Tom's potassium was low on Christmas Eve so they gave him something for that, plus the blood. He may need a little more blood so if he does, I wish they would get on with it so he could go home.
Tom got on to me for posting that he "fell" last week (apparently a couple of folks have called him and asked him about it). He said he didn't "fall" but just "slipped". Whatever . . . he still has a swollen, bruised wrist. I have kindly requested that he call the nurse or tech and let them know he is going to get up (and they can run or ignore him as they please). He told me he could take care of himself so I guess he will be stubborn and I will pray that he doesn't "slip" again!
Don't laugh, they were on sale and are actually pretty nice. All the others I've looked at are cheap sweater fabric. The dogs were not too excited but I'll try again and see if they get used to them. Sorry the pix is a little blury, they would not stand still. They look humiliated, don't they?!? It could be worse - I tried getting a picture of them wearing Santa hats, Finley chewed the pom-pom off of hers before I could even get Fritzi's on. The hats went in the trash.
Dr. Dunn, the kidney doctor, came in this morning and asked when Dr. Rutland was going to let Tom go home. I guess he sees no need for Tom to stay in the hospital. He doesn't even think there is a need for IV lasix and that the oral form will do just fine. The process is slower than we would like. Tom said it's difficult for him to get around with his legs still so swollen. At times it doesn't even seem like the swelling has gone down at all but it will leave his legs/feet last. Tom was up once overnight (he said). Dr. Dunn asked him about physical therapy - which Tom has not had during his stay. Tom didn't have anything good to say about the hospital PT people. I think every little bit helps but that's just my opinion. My biggest worry with him coming home is falling. It is so easy for him to lose his balance and he gets frustrated using the walker too. Dr. Dunn was going to talk to Dr. Rutland today so maybe we'll get some good news.
Tom was a bit lethargic last night. They didn't give him any blood yesterday and were going to watch and see if the counts came up on their own. I hope I am there today when Dr. Rutland comes by. I want to ask him about all of the other things - electrolytes and such just to make sure nothing else is wrong. Tom's potassium was low on Christmas Eve so they gave him something for that, plus the blood. He may need a little more blood so if he does, I wish they would get on with it so he could go home.
Tom got on to me for posting that he "fell" last week (apparently a couple of folks have called him and asked him about it). He said he didn't "fall" but just "slipped". Whatever . . . he still has a swollen, bruised wrist. I have kindly requested that he call the nurse or tech and let them know he is going to get up (and they can run or ignore him as they please). He told me he could take care of himself so I guess he will be stubborn and I will pray that he doesn't "slip" again!
I managed to get up early yesterday and stole 2 hours to go to the mall and run a few errands. I bought Tom a couple of things and sweaters for the dogs. They get so cold and sometimes refuse to go outside - but I don't think this is going to help. I will NOT put these on at 3 am for a potty trip outside!!
Sunday, December 25, 2011
Christmas in the hospital
We've actually had a very nice Christmas - the highlight of course was the surprise visit from Tom's sisters and their families. We had a feast of food and lots of wonderful gifts including a huge bag of snacks from his sister Cathy's co-workers and a special gift from another friend of hers - we are so humbled and blessed. I know it made all the difference in the world to Tom to have his family here. I'm sure he will sleep well tonight too.
Another highlight today was that Tom was allowed to get up and walk around just a little. It was only one time but hopefully he will have a chance to get up more tomorrow. This morning the doc told Tom that things were looking better. The blood Tom received yesterday didn't bring his red blood count up enough so he will probably get some more tomorrow. It should help him feel stronger. He ran a bit of a temperature yesterday and last night but it's been normal today.
I've prayed for all of you and hope you've had a blessed Christmas day. Please continue to spread the joy and hope of Christ's birth throughout the new year.
God bless you.
Another highlight today was that Tom was allowed to get up and walk around just a little. It was only one time but hopefully he will have a chance to get up more tomorrow. This morning the doc told Tom that things were looking better. The blood Tom received yesterday didn't bring his red blood count up enough so he will probably get some more tomorrow. It should help him feel stronger. He ran a bit of a temperature yesterday and last night but it's been normal today.
I've prayed for all of you and hope you've had a blessed Christmas day. Please continue to spread the joy and hope of Christ's birth throughout the new year.
God bless you.
Merry Christmas
Luke 2:11 ESV
For unto you is born this day in the city of David, a Savior who is Christ the Lord.
Peace be with you.
Merry Christmas!
Love, Tom and Jeanne
For unto you is born this day in the city of David, a Savior who is Christ the Lord.
Peace be with you.
Merry Christmas!
Love, Tom and Jeanne
Saturday, December 24, 2011
Christmas Eve - 2
Tonight is better. Tom seems to be in a little better mood. He is currently receiving his second unit of blood. He did receive albumin and lasix about 4 pm. His doctor has restricted his fluid intake to 1500 cc's which is not very much. Tom likes his juice and soda. Tom doesn't understand the need for the restriction and doesn't like my explanation so he said he would talk to the doc about it tomorrow. I think he's mad that Dr. Rutland didn't tell him he was restricting the fluids. Dr. Rutland is on call this weekend. I'm happy about that because I thought if an on-call doc was working there was no chance of going home. I am doubting Tom will be going home tomorrow anyway. My guess is Tuesday - when I go back to work!!!
I've got things all ready for our Christmas surprise and dinner tomorrow. I'm not quite sure how we're going to get it all in here but it will be fun trying. I hope it really cheers Tom up. I know the staff here tried to get as many patients home as they could, but there are still a lot here so we're not alone. It's sad when you think about it. It will be difficult to be at home tonight and wake up tomorrow apart from Tom but we'll survive.
I went home to feed and check on the pups earlier and found a plate of Christmas candy from our neighbors. We are blessed to be the recipients of so much neighborly Christmas Joy! On the way back I found myself making up new words to Christmas carols about being in the hospital on Christmas Eve and Christmas Day. I must be going crazy!
Tom has a good team tonight so he will be in good hands.
We pray that you all are having a wonderful Christmas Eve.
Blessings,
Jeanne
I've got things all ready for our Christmas surprise and dinner tomorrow. I'm not quite sure how we're going to get it all in here but it will be fun trying. I hope it really cheers Tom up. I know the staff here tried to get as many patients home as they could, but there are still a lot here so we're not alone. It's sad when you think about it. It will be difficult to be at home tonight and wake up tomorrow apart from Tom but we'll survive.
I went home to feed and check on the pups earlier and found a plate of Christmas candy from our neighbors. We are blessed to be the recipients of so much neighborly Christmas Joy! On the way back I found myself making up new words to Christmas carols about being in the hospital on Christmas Eve and Christmas Day. I must be going crazy!
Tom has a good team tonight so he will be in good hands.
We pray that you all are having a wonderful Christmas Eve.
Blessings,
Jeanne
Christmas Eve
Merry Christmas everyone!
Tom's wrist seems to be better today - that's about all of the info I've gotten out of him so far. He is in a very bad mood.
Late last night when I left he seemed to be doing much better. I offered again to stay and he said no. Anyone want to sit with him today? I can't wait for his sisters to arrive tomorrow. I sure hope that cheers him up!
I don't know if the docs have been in or what they have said. I guess they are continuing to do the same thing. I'll have to try getting some info out of the nurses.
If anything changes, I'll post again.
Tom's wrist seems to be better today - that's about all of the info I've gotten out of him so far. He is in a very bad mood.
Late last night when I left he seemed to be doing much better. I offered again to stay and he said no. Anyone want to sit with him today? I can't wait for his sisters to arrive tomorrow. I sure hope that cheers him up!
I don't know if the docs have been in or what they have said. I guess they are continuing to do the same thing. I'll have to try getting some info out of the nurses.
If anything changes, I'll post again.
Friday, December 23, 2011
Not broken
According to Dr. Rutland, Tom's wrist is not broken. Apparently the radiologist has not read it yet for official word. Tom now has a splint for it and I think it's feeling a bit better. Dr. Rutland came in before I made a trip home - he said that Tom' output yesterday was 3 liters! Add that to the 7 they pulled from his abdomen and I call that progress! I asked him if Tom was only getting one dose of albumin and lasix a day. He said one albumin and 2 lasix. He didn't say anything to me about Tom not going home so I've decided to hold on to hope that Tom will be home on Christmas - even if it's Christmas night. I told Tom I would stay here tonight but he said he would be ok. I went home a while ago to check on and feed the pups and found some beautiful flowers left on our door by our wonderful neighbors.
Each time I go home the dogs run to the back door waiting for Tom to come in - they are really missing him. I think they are a little tired of staying in the kitchen all day. Last night I came home and they had torn their Christmas placemat to shreds. It was everywhere! I spent a whole dollar on it too! I told them they would get another one when they were half-price!
Thanks for all your thoughts and prayers. Hopefully Tom's wrist will heal super-fast. He needs both hands to help get around, in and out of car, house and such.
Merry Christmas!
Each time I go home the dogs run to the back door waiting for Tom to come in - they are really missing him. I think they are a little tired of staying in the kitchen all day. Last night I came home and they had torn their Christmas placemat to shreds. It was everywhere! I spent a whole dollar on it too! I told them they would get another one when they were half-price!
Thanks for all your thoughts and prayers. Hopefully Tom's wrist will heal super-fast. He needs both hands to help get around, in and out of car, house and such.
Merry Christmas!
Just when you thought ...
...it couldn't get any worse. Toms doc came in early this morning and told him he would not be going home this weekend. He is beyond upset to be spending Christmas in the hospital. Lots of thoughts go through my head when I think about spending another holiday in the hospital but I am trying to focus on much more positive things like Tom is still alive and we are going to spend Christmas together and with his sisters who have changed their plans and are coming up on Christmas day to surprise him!
When he tried to get up to go to the bathroom later this morning, he tripped and fell. He hurt his leg, wrist and pulled his catheter. I got here right after they got him cleaned up and back to bed and things were still not going well. There was lots of blood. They have removed and replaced the cath and we are waiting on a portable X-ray for his wrist. The pain is very intense and he is even more miserable (if that is even possible). All of these additional injuries add to the possibility of infection so pray that doesn't happen.
It's really difficult to understand why these meds cannot be given to him by a home health nurse. He is receiving albumin which takes about 45 minutes by IV, followed 30 minutes later by a lasix injection. This happens only once a day and for that he spends the other 22.5 hours laying in bed. When I check the bed scale, his weight is coming down slowly. They want to make sure not to do too much that might upset the kidneys - we don't want that either - they've been every stable and his output has been phenomenal so hopefully this setback will not affect anything else. Needless to say he will not be getting up anymore - of course, that creates more challenges with his care.
A prayer has been answered and X-ray just arrived. Hopefully there is someone here who can read it and Tom can get some kind of relief very soon. He cannot take a lot of pain meds so they have given him all he can have until 6 pm.
I'll send another update when we have X-ray results. Pray for us both!
Thank you!
When he tried to get up to go to the bathroom later this morning, he tripped and fell. He hurt his leg, wrist and pulled his catheter. I got here right after they got him cleaned up and back to bed and things were still not going well. There was lots of blood. They have removed and replaced the cath and we are waiting on a portable X-ray for his wrist. The pain is very intense and he is even more miserable (if that is even possible). All of these additional injuries add to the possibility of infection so pray that doesn't happen.
It's really difficult to understand why these meds cannot be given to him by a home health nurse. He is receiving albumin which takes about 45 minutes by IV, followed 30 minutes later by a lasix injection. This happens only once a day and for that he spends the other 22.5 hours laying in bed. When I check the bed scale, his weight is coming down slowly. They want to make sure not to do too much that might upset the kidneys - we don't want that either - they've been every stable and his output has been phenomenal so hopefully this setback will not affect anything else. Needless to say he will not be getting up anymore - of course, that creates more challenges with his care.
A prayer has been answered and X-ray just arrived. Hopefully there is someone here who can read it and Tom can get some kind of relief very soon. He cannot take a lot of pain meds so they have given him all he can have until 6 pm.
I'll send another update when we have X-ray results. Pray for us both!
Thank you!
Thursday, December 22, 2011
MAKING PROGRESS
If the bed scale is correct, Tom as dropped about 15 lbs overnight! They finally got all of the albumin and lasix in overnight and things seem to be working. I don't know how often he will get these meds but hopefully the rapid progress will continue and Tom will get to go home on Saturday - that is our goal! Tom is "having a talk" with all of his care-givers to let them know what they need to be doing. I'm feeling kind of sorry for them because I'm sure they are hearing this from everyone this week. Of course, if there are fewer patients for them to care for, they get to go home early too so they would probably like to see as many patients as possible go home. I am trying to keep my mouth shut - difficult as it is!!
The nurse and tech were in and out all night so it doesn't sound like Tom got much sleep. He was planning to take a nap after breakfast - I envy him for that. I was late getting home last night and the dogs were wild. They stayed outside for a really long time and were running back and forth through the house until after midnight. I believe they caught, killed and gutted a rabbit since I found it in the driveway this morning. Not exactly something you want to see at 4:15 am! It was about the size of Fritzi! Tom thinks maybe a ocyote or something killed it first - even more scary if one of those was in our yard! I think a coyote would have done more damage to the rabbit - poor thing.
I don't know if I'll go to the hospital at lunch today or not. Tom seems to be handling everything and asking good questions so I don't feel like I need to intervene. I do like hearing first-hand what the doctor says though. Tomorrow is a holiday for me so hopefully the dogs and I can sleep in a little and do a few chores before heading to the hospital in time to catch the doctor.
Your mighty prayers are working - THANKS!!
The nurse and tech were in and out all night so it doesn't sound like Tom got much sleep. He was planning to take a nap after breakfast - I envy him for that. I was late getting home last night and the dogs were wild. They stayed outside for a really long time and were running back and forth through the house until after midnight. I believe they caught, killed and gutted a rabbit since I found it in the driveway this morning. Not exactly something you want to see at 4:15 am! It was about the size of Fritzi! Tom thinks maybe a ocyote or something killed it first - even more scary if one of those was in our yard! I think a coyote would have done more damage to the rabbit - poor thing.
I don't know if I'll go to the hospital at lunch today or not. Tom seems to be handling everything and asking good questions so I don't feel like I need to intervene. I do like hearing first-hand what the doctor says though. Tomorrow is a holiday for me so hopefully the dogs and I can sleep in a little and do a few chores before heading to the hospital in time to catch the doctor.
Your mighty prayers are working - THANKS!!
Wednesday, December 21, 2011
Progress
Well it's been a productive day - so far. The PIC line was in good shape so nothing needed to be done to it. Our prayers were heard and they pulled some fluid from Tom's abdomen - about 7 liters according to Tom!
At this moment they are trying to give him some albumin but there is a problem with the tubing so it's taking a while to get that started. I really like the bulbs we have at home for delivering the IV meds, they should use them here. Anyway, once that runs, they will give him lasix. I think his day nurse said they were going to double up on the lasix.
This night nurse is not our favorite. She's kind of ditzy so I'm a little concerned that things will continue to move quickly through the night. If they don't I'm sure someone will hear about it from Tom. At least he has a really good tech. Please continue to pray that the meds will push this fluid out. Tom will hopefully feel the benefits of today's procedure in the next 24 hours.
Thanks for your continued support!
At this moment they are trying to give him some albumin but there is a problem with the tubing so it's taking a while to get that started. I really like the bulbs we have at home for delivering the IV meds, they should use them here. Anyway, once that runs, they will give him lasix. I think his day nurse said they were going to double up on the lasix.
This night nurse is not our favorite. She's kind of ditzy so I'm a little concerned that things will continue to move quickly through the night. If they don't I'm sure someone will hear about it from Tom. At least he has a really good tech. Please continue to pray that the meds will push this fluid out. Tom will hopefully feel the benefits of today's procedure in the next 24 hours.
Thanks for your continued support!
AS EXPECTED . . .
Tom went back to the hospital this morning to get his PIC line fixed and to hopefully drain some fluid. He is carrying about 50 lbs of fluid right now and it is really difficult.
As he was getting out of the car, his doctor called and said he couldn't promise that Tom would be out by Christmas and asked if he wanted to wait. Tom asked me what I thought and I told him I thought he should go ahead and start getting better. With the way he is gaining weight, he wouldn't have been able to move by Monday and would probably have trouble breathing too.
They got him admitted and in a room quickly (our favorite room 6110). Shortly after, they did a chest x-ray to see the placement of the PIC line. Tom called just a little while ago and said the PIC line was fine. They were able to flush it and get good blood return on each "tail". If I had tried that at home, there would have been bigger problems!!
So, hopefully the doc will go by at lunch and start writing orders and get things moving. They cannot pull all of the fluid off but will do as much as they can and not upset the kidneys. I'm sure he will get back on IV lasix and albumin too.
I ask that you pray for Tom - this is particularly difficult for him - he's very upset about possibly being in the hospital on Christmas. Pray that the fluid will start coming off quickly and we can get home by Saturday and manage the rest from there. I told him we can and should celebrate the true meaning of Christmas every day and we can do that anywhere - even in a hospital room.
One day at a time . . .
As he was getting out of the car, his doctor called and said he couldn't promise that Tom would be out by Christmas and asked if he wanted to wait. Tom asked me what I thought and I told him I thought he should go ahead and start getting better. With the way he is gaining weight, he wouldn't have been able to move by Monday and would probably have trouble breathing too.
They got him admitted and in a room quickly (our favorite room 6110). Shortly after, they did a chest x-ray to see the placement of the PIC line. Tom called just a little while ago and said the PIC line was fine. They were able to flush it and get good blood return on each "tail". If I had tried that at home, there would have been bigger problems!!
So, hopefully the doc will go by at lunch and start writing orders and get things moving. They cannot pull all of the fluid off but will do as much as they can and not upset the kidneys. I'm sure he will get back on IV lasix and albumin too.
I ask that you pray for Tom - this is particularly difficult for him - he's very upset about possibly being in the hospital on Christmas. Pray that the fluid will start coming off quickly and we can get home by Saturday and manage the rest from there. I told him we can and should celebrate the true meaning of Christmas every day and we can do that anywhere - even in a hospital room.
One day at a time . . .
Tuesday, December 20, 2011
A BAD MONDAY
OK, now that it's over, it really wasn't THAT bad but it sure seemed like it at the time.
Tom and I went to Birmingham on Sunday because he didn't want to do the down-and-back in one day - which I totally understand. Birmingham is about 3 hours from our house, so not a bad trip. However, we didn't leave until about 4:30 so I drove most of it in the dark while Tom napped. I made a reservation at the hotel connected to the hospital and requested a handicap room - why, why, why did they put the handicap rooms at the END of the hall?? The only thing handicap about it was a bigger bathroom (which is nice) and all the bars. The bed and all the chairs were still pretty low to the ground and are very difficult for Tom (with extremely swollen legs) to get in and out of.
We were up early Monday, so we got ready to go have a nice breakfast together. It was quite a struggle for me to get Tom out of the chair and I messed up his PIC line which started bleeding (a real setback for my nursing skills). That landed us in the UAB emergency room at 7:30. They looked it over and took Tom to get an ultrasound. I thought we would have plenty of time to get it all fixed and make the doctors appointment on time . . . NOT! At 10:30 they discharged us from the ER. The PIC line was no longer bleeding but the ultrasound had not been read and they couldn't do anything until they knew the status. They put Tom in a wheelchair and pushed him over to the clinic so he could have the necessary labs drawn before seeing the doctor. I think we walked at least a mile to get there. Tom got the labs done and we were over at the doctors waiting room by 11:15. His appointment to see the doctor was at 12:15. I walked back over to the hospital to get us something to eat. They took Tom to the room at 12:30. At 1:15 I opened the door and saw the nurse. She "mentioned" that the doctor usually doesn't get over to the clinic until 1:30. I asked her why they made us an appointment at 12:15 if the doctor didn't get there until 1:30 . . . she shrugged her shoulders. I asked about getting the PIC line fixed - she knew nothing about that either. (The ER doc supposedly talked to the clinic and arranged for the PIC to be fixed either at the clinic or back at the hospital after Tom's appointment).
When Dr. Alkurdi came in, he recognized us from our previous stay and was very nice. The first question out of Tom's mouth was - how do I get a liver because this isn't working for me (referring to the now 50 lbs of extra fluid). Dr. Alkurdi reviewed all that has happened since we were last at UAB and mentioned a procedure called a Denver Shunt which is like a pump to help get rid of the fluid. It sounds good and is a simple procedure but any foreign object in the body becomes a source of infection so Dr. Alkurdi is going to talk to the transplant team to see what they think. I don't know when that will be or when we will know if it's an option. Since the team meets every Monday afternoon, they might have discussed it yesterday - or, it may have to be added to the agenda ahead of time - who knows? No, I didn't think to ask.
The other "benefit" of the Denver Shunt is that it will increase Tom's INR - which is the lack of blood clotting abilities. Now, this is not exactly a good thing but a higher INR will move him back up the transplant list. The biggest factor on moving up the list is kidney function and Tom's kidney function is great (which we want). So this might be a way to get him back up the list and get a liver sooner. We'll pray about it and wait to hear what they say.
We made it home about 5:30 pm. Once we got unloaded, settled, chased the dogs (I forgot to close the gate), got a couple of new Rx's filled and picked up dinner, it was late which is why you didn't get a post last night. One of the new meds is a different diuretic that Dr. Rutland prescribed. It had to be ordered and did not come in until yesterday. The second Rx is a different med to hopefully help with the nerve pain and numbness Tom still has in his hands and feet - it would be so wonderful to get this issue resolved.
Tom is contacting Dr. Rutland today to see about getting the PIC line fixed and also getting the fluid pulled out of his abdomen. They will have to put him in the hospital for this. He would like to wait a couple of days to see how the new diuretic works - I prefer that he go ahead and get it done so he can get in and out of the hospital sooner. We'll see what the doctor recommends. In the meantime, I am not giving Tom any IV meds.
So, keep checking to find out what happens next!
Tom and I went to Birmingham on Sunday because he didn't want to do the down-and-back in one day - which I totally understand. Birmingham is about 3 hours from our house, so not a bad trip. However, we didn't leave until about 4:30 so I drove most of it in the dark while Tom napped. I made a reservation at the hotel connected to the hospital and requested a handicap room - why, why, why did they put the handicap rooms at the END of the hall?? The only thing handicap about it was a bigger bathroom (which is nice) and all the bars. The bed and all the chairs were still pretty low to the ground and are very difficult for Tom (with extremely swollen legs) to get in and out of.
We were up early Monday, so we got ready to go have a nice breakfast together. It was quite a struggle for me to get Tom out of the chair and I messed up his PIC line which started bleeding (a real setback for my nursing skills). That landed us in the UAB emergency room at 7:30. They looked it over and took Tom to get an ultrasound. I thought we would have plenty of time to get it all fixed and make the doctors appointment on time . . . NOT! At 10:30 they discharged us from the ER. The PIC line was no longer bleeding but the ultrasound had not been read and they couldn't do anything until they knew the status. They put Tom in a wheelchair and pushed him over to the clinic so he could have the necessary labs drawn before seeing the doctor. I think we walked at least a mile to get there. Tom got the labs done and we were over at the doctors waiting room by 11:15. His appointment to see the doctor was at 12:15. I walked back over to the hospital to get us something to eat. They took Tom to the room at 12:30. At 1:15 I opened the door and saw the nurse. She "mentioned" that the doctor usually doesn't get over to the clinic until 1:30. I asked her why they made us an appointment at 12:15 if the doctor didn't get there until 1:30 . . . she shrugged her shoulders. I asked about getting the PIC line fixed - she knew nothing about that either. (The ER doc supposedly talked to the clinic and arranged for the PIC to be fixed either at the clinic or back at the hospital after Tom's appointment).
When Dr. Alkurdi came in, he recognized us from our previous stay and was very nice. The first question out of Tom's mouth was - how do I get a liver because this isn't working for me (referring to the now 50 lbs of extra fluid). Dr. Alkurdi reviewed all that has happened since we were last at UAB and mentioned a procedure called a Denver Shunt which is like a pump to help get rid of the fluid. It sounds good and is a simple procedure but any foreign object in the body becomes a source of infection so Dr. Alkurdi is going to talk to the transplant team to see what they think. I don't know when that will be or when we will know if it's an option. Since the team meets every Monday afternoon, they might have discussed it yesterday - or, it may have to be added to the agenda ahead of time - who knows? No, I didn't think to ask.
The other "benefit" of the Denver Shunt is that it will increase Tom's INR - which is the lack of blood clotting abilities. Now, this is not exactly a good thing but a higher INR will move him back up the transplant list. The biggest factor on moving up the list is kidney function and Tom's kidney function is great (which we want). So this might be a way to get him back up the list and get a liver sooner. We'll pray about it and wait to hear what they say.
We made it home about 5:30 pm. Once we got unloaded, settled, chased the dogs (I forgot to close the gate), got a couple of new Rx's filled and picked up dinner, it was late which is why you didn't get a post last night. One of the new meds is a different diuretic that Dr. Rutland prescribed. It had to be ordered and did not come in until yesterday. The second Rx is a different med to hopefully help with the nerve pain and numbness Tom still has in his hands and feet - it would be so wonderful to get this issue resolved.
Tom is contacting Dr. Rutland today to see about getting the PIC line fixed and also getting the fluid pulled out of his abdomen. They will have to put him in the hospital for this. He would like to wait a couple of days to see how the new diuretic works - I prefer that he go ahead and get it done so he can get in and out of the hospital sooner. We'll see what the doctor recommends. In the meantime, I am not giving Tom any IV meds.
So, keep checking to find out what happens next!
Friday, December 16, 2011
Today's Doctors Appointment
Tom's doctors appointment today went well. Tom still has a lot of fluid so Dr. Rutland has prescribed another diuretic. He is also going to add four more days of IV antibiotics along with the Lasix so that should keep my nursing skills fresh. Tom had blood drawn today and Dr. Rutland said he would send those results to UAB. It will be interesting to see how they compare to Monday's results. The fluid is really bothering Tom and makes it difficult for him to get around. The doctor has requested he stay off his feet as much as possible.
Monday will be a busy day at UAB. Tom will have an ultrasound, get his blood work done and visit with the doctor. It will be good for them to see all of this fluid - I don't know if that will help his cause since they score only on the blood tests. It seems like it should factor in somewhere. Dr. Rutland says he can pull the fluid off but Tom will need to be hospitalized for that so we're going to wait and see how this new med does and also see what UAB says - hopefully UAB won't want to keep him in Birmingham to do the same thing!
Tom's uncle, Bob, has been visiting us. It is so nice to have family in town. It's really good for Tom. Bob wanted a list of things to do but I couldn't really think of anything that didn't involve being outdoors. It is cold, windy and rainy today so Tom suggested he prime a new door we have in the house. I hadn't done anything to it because I wasn't sure if I wanted it stained or painted. I guess we'll be painting it - eventually - once I decide on what the kitchen cabinets and flooring are going to look like.
Please pray that the fluid works its way out of Tom's system.
Monday will be a busy day at UAB. Tom will have an ultrasound, get his blood work done and visit with the doctor. It will be good for them to see all of this fluid - I don't know if that will help his cause since they score only on the blood tests. It seems like it should factor in somewhere. Dr. Rutland says he can pull the fluid off but Tom will need to be hospitalized for that so we're going to wait and see how this new med does and also see what UAB says - hopefully UAB won't want to keep him in Birmingham to do the same thing!
Tom's uncle, Bob, has been visiting us. It is so nice to have family in town. It's really good for Tom. Bob wanted a list of things to do but I couldn't really think of anything that didn't involve being outdoors. It is cold, windy and rainy today so Tom suggested he prime a new door we have in the house. I hadn't done anything to it because I wasn't sure if I wanted it stained or painted. I guess we'll be painting it - eventually - once I decide on what the kitchen cabinets and flooring are going to look like.
Please pray that the fluid works its way out of Tom's system.
Wednesday, December 14, 2011
WE SURVIVED
The couch wasn't so comfortable Sunday night so I went to bed with both puppies and a lot of blankets. I set the timer on my phone to go off every 75 minutes and got up to put more wood on the fire. Fortunately I was able to get back to sleep quickly every hour (my shifts staying with Tom in the hospital were good training for that).
The part was installed about 1 pm Monday and all is well! I think Finley is missing the portable heater though, she found a nice spot right in front of it. Fritzi prefers to sit on the fireplace hearth when we have a fire burning - they're so cute!
Tom is doing well. The pain is subsiding but the swelling is still a problem. He called his doctor and asked for IV lasix - which they approved. So, yesterday when I got home from work, I found out the laxix would be delivered last night and I made arrangements to be "trained" on administering it. It is in the same sort of "bubble" as the antibiotic. There are five doses and he will receive it once a day along with a dose of lasix in pill form.
I think today is the last day for the IV antibiotic. Tom goes back to the doctor on Friday so I guess we'll find out then if he needs more.
We thought we had an appointment at the UAB Liver Center next week but after making several calls to confirm, it doesn't appear they need to see us. I don't know why it is all of the sudden so difficult for them to call us back!?! Tom and I would really like to be seen by the docs there but I'm wondering if we have "fallen off their radar" because his MELD score is so low? I'm hoping to hear something from them today.
I'll send another update this weekend after the doctors appointment. Hope everyone is finishing up their Christmas shopping - It's going to be crazy out there this weekend!
The part was installed about 1 pm Monday and all is well! I think Finley is missing the portable heater though, she found a nice spot right in front of it. Fritzi prefers to sit on the fireplace hearth when we have a fire burning - they're so cute!
Tom is doing well. The pain is subsiding but the swelling is still a problem. He called his doctor and asked for IV lasix - which they approved. So, yesterday when I got home from work, I found out the laxix would be delivered last night and I made arrangements to be "trained" on administering it. It is in the same sort of "bubble" as the antibiotic. There are five doses and he will receive it once a day along with a dose of lasix in pill form.
I think today is the last day for the IV antibiotic. Tom goes back to the doctor on Friday so I guess we'll find out then if he needs more.
We thought we had an appointment at the UAB Liver Center next week but after making several calls to confirm, it doesn't appear they need to see us. I don't know why it is all of the sudden so difficult for them to call us back!?! Tom and I would really like to be seen by the docs there but I'm wondering if we have "fallen off their radar" because his MELD score is so low? I'm hoping to hear something from them today.
I'll send another update this weekend after the doctors appointment. Hope everyone is finishing up their Christmas shopping - It's going to be crazy out there this weekend!
Sunday, December 11, 2011
No heat
I know you are anxious to know what is happening at the Murphy's (law) house lately!! It's been pretty cold here and yesterday it seemed that inside the house it just wouldn't warm up. We had started a fire and often the heat will not kick in because the thermostat is right outside the family room. I went on to bed in a very cold bedroom. Several times during the night I woke up and was freezing. I even tried to get the puppies to share their little heating pad! At 4 am I got out of bed to check the thermostat. It was 61 degrees. In the summer, that would be normal for us! Anyway, I messed with the controls and couldn't get the system to kick in. Tom had been sleeping in his chair (normal) and commented that he was cold too even with the electric blanket on high. So, we determined we had a BIG problem. I carried the portable heater down from the bonus room and started another fire, after going out in the 20 degree weather to get firewood. Needless to say, we were all wide awake by this time (4:30 am).
We had breakfast and I grabbed every heated blanket, throw and heating pad we own and piled them in the family room. It was still so cold. The upstairs heat worked fine but Tom can't get up the stairs so that was no good. I, however, went up and took a long, hot shower. I placed a call to the heat/air folks who said they would be out around 3 pm and hauled in the remaining firewood.
Fortunately on Saturday Tom had ordered a load of firewood to be delivered today and we had just enough to make it until the wood was scheduled to arrive. Tom called right when Sunday School ended and said the heat/air folks had arrived. All the way home I prayed that it would be a simple and inexpensive fix - maybe a new thermostat or something. Our downstairs unit is only 4 years old!
The most important prayer was answered - the problem is in some kind of switch that is covered under warranty so it won't cost us anything! Unfortunately they cannot get the part until tomorrow (hopefully). So, the home fires are burning non-stop. I guess I'll be sleeping on the couch so I can keep wood on the fire all night. We are thankful for firewood and electricity!
Other than that, Tom is doing well. His leg is still more swollen than he would like so it's difficult and painful for him to get around. I'm quite impressed with my skill at giving IV meds - Tom even wants to see if he can take the lasix by IV like they were giving him in the hospital because he thinks it works bettere than the tablet version. I doubt that is going to happen! Anyway, I guess I'd better sign off and finish cleaning up the kitchen - need to figure out my sleeping arrangements before I fall asleep standing up!
We had breakfast and I grabbed every heated blanket, throw and heating pad we own and piled them in the family room. It was still so cold. The upstairs heat worked fine but Tom can't get up the stairs so that was no good. I, however, went up and took a long, hot shower. I placed a call to the heat/air folks who said they would be out around 3 pm and hauled in the remaining firewood.
Fortunately on Saturday Tom had ordered a load of firewood to be delivered today and we had just enough to make it until the wood was scheduled to arrive. Tom called right when Sunday School ended and said the heat/air folks had arrived. All the way home I prayed that it would be a simple and inexpensive fix - maybe a new thermostat or something. Our downstairs unit is only 4 years old!
The most important prayer was answered - the problem is in some kind of switch that is covered under warranty so it won't cost us anything! Unfortunately they cannot get the part until tomorrow (hopefully). So, the home fires are burning non-stop. I guess I'll be sleeping on the couch so I can keep wood on the fire all night. We are thankful for firewood and electricity!
Other than that, Tom is doing well. His leg is still more swollen than he would like so it's difficult and painful for him to get around. I'm quite impressed with my skill at giving IV meds - Tom even wants to see if he can take the lasix by IV like they were giving him in the hospital because he thinks it works bettere than the tablet version. I doubt that is going to happen! Anyway, I guess I'd better sign off and finish cleaning up the kitchen - need to figure out my sleeping arrangements before I fall asleep standing up!
Saturday, December 10, 2011
HOME
We made it home about 4 pm yesterday. It took a while to get settled but Tom is doing well. No problems with the first dose of antibiotics at 10 pm. Of course, it was hard to stay awake that long and then I had to wait until it was finished - which was about 11 pm. Finally made it to bed and then the alarm went off at 6 am this morning for the next dose. The home health nurse called shortly after that and is here now. He's spent about 5 minutes checking Tom's BP and temp and the rest of the time filling out paperwork. I would LOVE to make it to the Y this morning but that's not looking good right now. I thought I was going to be able to make a quick trip to the grocery store before my class since we were up so early, but then the home health nurse called.
Tom said his leg is feeling better today. It's still a chore for him to get up and down and then a chore for me to help get him comfortable but that should get better soon.
Dave came over last night and spent some time with Tom. I had hoped to "escape" for a couple of hours but didn't want to leave Dave with the task of serving Tom although he did handle serving him dinner while I went over the inventory of supplies with the IV solutions rep. When we did the practice run at the hospital, I had the medicine, an alcohol wipe, some saline to flush his PIC line and some gloves. You should see all the stuff that arrived last night! There's all kinds of pieces and parts! It seemed so simple at the hospital. Needless to say, all that extra stuff is still in the box. I was particularily interested in the supplies to use in case Tom had an alergic reaction to the IV medicine. I have no idea what to do with it or how to administer it. I probably should have read the directions ahead of time (if there are any) but since he's been taking the medicine all week, I trusted that there would be no reaction - nothing like living on the edge, huh???
We thank you for your continued prayers, e-mails, calls, texts and visits. Please keep praying for Dennis' mom and his family too. She is slightly better.
Tom said his leg is feeling better today. It's still a chore for him to get up and down and then a chore for me to help get him comfortable but that should get better soon.
Dave came over last night and spent some time with Tom. I had hoped to "escape" for a couple of hours but didn't want to leave Dave with the task of serving Tom although he did handle serving him dinner while I went over the inventory of supplies with the IV solutions rep. When we did the practice run at the hospital, I had the medicine, an alcohol wipe, some saline to flush his PIC line and some gloves. You should see all the stuff that arrived last night! There's all kinds of pieces and parts! It seemed so simple at the hospital. Needless to say, all that extra stuff is still in the box. I was particularily interested in the supplies to use in case Tom had an alergic reaction to the IV medicine. I have no idea what to do with it or how to administer it. I probably should have read the directions ahead of time (if there are any) but since he's been taking the medicine all week, I trusted that there would be no reaction - nothing like living on the edge, huh???
We thank you for your continued prayers, e-mails, calls, texts and visits. Please keep praying for Dennis' mom and his family too. She is slightly better.
Friday, December 9, 2011
Going home - eventually
Sometime today Tom will get to leave the hospital. I am waiting to learn a new nursing skill of administering IV antibiotics. Once Tom gets his dose at 2 pm, he will be discharged. He will receive the antibiotic every 8 hours so I will be the one to give him the 10 pm dose since apparently it is difficult to find someone to make house calls that late. I can't imagine they will want to come out at 7 am either so I'll just plan on giving them as needed and hopefully someone can come out mid-day and check my work. It sounds like he will need them for one week.
Our company will not be coming to town this weekend so my co-worker and his family will be attending the Rockettes show tonight.
Toms friend Dave may come visit this evening. If so, I will try to do a bit of Christmas shopping.
Please pray for Tom's friend, Dennis, and his family. Dennis' mother was admitted to ICU last night and has a serious heart condition. She is in a different hospital so we're not able to be with him as he has been for us.
Lesson time, gotta go!
Our company will not be coming to town this weekend so my co-worker and his family will be attending the Rockettes show tonight.
Toms friend Dave may come visit this evening. If so, I will try to do a bit of Christmas shopping.
Please pray for Tom's friend, Dennis, and his family. Dennis' mother was admitted to ICU last night and has a serious heart condition. She is in a different hospital so we're not able to be with him as he has been for us.
Lesson time, gotta go!
Thursday, December 8, 2011
Home soon
It looks like Tom will get to go home tomorrow. Dr. Rutland and Dr. Dunn have talked and they are going to go ahead and put a pic line in today and also give Tom a couple of units of blood. They will arrange for home health to give him antibiotics until the infection clears up. Dr. Rutland also mentioned again having the Infectious Disease doc come in a provide his opinion but now that he's made the decision on the pic line and discharge, that may not happen.
So, please pray that Tom will be discharged in the morning and that we will actually get out of here in the morning. We have company coming to town and tickets to see the Rockettes tomorrow night (it's a Christmas tradition - Tom doesn't go) and I really want to go. Otherwise Tom will have to wait until the show is over :-). That's mean, I know!
So, please pray that Tom will be discharged in the morning and that we will actually get out of here in the morning. We have company coming to town and tickets to see the Rockettes tomorrow night (it's a Christmas tradition - Tom doesn't go) and I really want to go. Otherwise Tom will have to wait until the show is over :-). That's mean, I know!
Better and better
I passed Dr. Dunn in the hall this morning and he is very pleased with how Tom is doing. He said the red area on Tom's leg is smaller. He thinks that the medication Tom is taking for the adrenal gland issue has really made a difference in his overall progress.
Breakfast also arrived shortly after I did and it appears to be correct. Maybe we are finally getting somewhere! Tom called me last night and said he "got up and walked around the bed". I asked him if a nurse or tech was there to help him and he said no! Of course that's great news that he was up and also proves how stubborn he is! He said Dr. Dunn seemed to be the only one that was happy about the fact that he got up.
Anyway, Tom mentioned yesterday that they might give him a pic line so that when he goes home, someone could come over and give him antibiotics and blood, if necessary. Maybe that means he will get to go home very soon - surely that will make him happy!?! I can't imagine what a production it would be for him to be given blood at home. It takes two to three people to verify the information each time they give him some, I just envision a bus of nurses arriving at the house with one tiny bag of blood. Maybe he can just get some here before he goes home and then he won't need any for a while. We'll see what Dr. Rutland says today.
Breakfast also arrived shortly after I did and it appears to be correct. Maybe we are finally getting somewhere! Tom called me last night and said he "got up and walked around the bed". I asked him if a nurse or tech was there to help him and he said no! Of course that's great news that he was up and also proves how stubborn he is! He said Dr. Dunn seemed to be the only one that was happy about the fact that he got up.
Anyway, Tom mentioned yesterday that they might give him a pic line so that when he goes home, someone could come over and give him antibiotics and blood, if necessary. Maybe that means he will get to go home very soon - surely that will make him happy!?! I can't imagine what a production it would be for him to be given blood at home. It takes two to three people to verify the information each time they give him some, I just envision a bus of nurses arriving at the house with one tiny bag of blood. Maybe he can just get some here before he goes home and then he won't need any for a while. We'll see what Dr. Rutland says today.
Wednesday, December 7, 2011
Breakfast woes
I came in this morning to a very, very, very unhappy patient. It seems the new food service here at the hospital messed up again. They sent a breakfast tray he didn't order containing food he was not allowed to eat and would not let him order anything different. His orders have been wrong, late or non-existent since he's been here. Everyone is having trouble and the nurses and techs continue to complain. Obviously they have some kinks to work out. Tom is lashing out at everyone this morning. I even threatened to leave because he was not being cooperative at all. You can't get a straight answer out of him about anything so I can't really report on how he is doing. His leg looks a little better around the calf and ankle but worse up on the thigh. He said it still hurts. The kidney doc said his kidneys still look great. They did an ultrasound on his leg yesterday and didn't find any blood clots so that's good.
Hopefully he'll calm down later this morning. I'm about to run out of battery so I'll sign off for now. Keep praying and say an extra prayers for his nurses today!
Hopefully he'll calm down later this morning. I'm about to run out of battery so I'll sign off for now. Keep praying and say an extra prayers for his nurses today!
Tuesday, December 6, 2011
ANOTHER TRIP TO HOSPITAL
I don't even know what number this is!! Tom was admitted to the hospital yesterday morning for an infection in his leg. He had been to the doctor about it on Friday and was given some oral antibiotics. His doctor said if it wasn't better on Monday he would need to go to the hospital for IV antibiotics. It was not better. Tom could barely walk on Monday and there was no way he was going to get out of the house and into either vehicle so I called an ambulance to transport him.
The infection seems to be some type of cellulitis. I asked the doctor how Tom got the infection - was it something he did, ate, went, etc. The doc said no. Tom had been feeling really well so he'd been out and about and doing more at home. He was up on his feet a lot more and his lower legs had started to swell some. The doctor said that when your legs are swollen, the blood cannot circulate as well and it's much easier for an infection to take up residence. Apparently that is what happened. Tom's right leg is very swollen, very red, warm and extremely painful. It wasn't much better this morning so hopefully some more antibiotic will help that quickly. Dr. Rutland has requested an infectious disease specialist to see Tom today so maybe we'll get even more information - better yet - a quicker resolution. Dr. Dunn, the kidney doc, is also checking in on Tom to make sure the antibiotic doesn't upset the kidneys. This morning, they still looked good.
Overall, Tom's blood tests continue to look great. I did call the UAB Liver Center this morning and left a message to let them know Tom was in the hospital here. I just want to make sure they know what is going on. We still have plans to see them on Dec. 21st. If Tom is sick, I'd at least like the blood tests to show that - so he could move back up on the transplant list! At least the leg infection seems to be the only problem so hopefully it can get resolved without any other issues arising.
I am not staying at the hospital - at least so far. I'd like to stay but it is so much easier not to lug my stuff back and forth and worry about care for the puppies. It is more restful too. Tom would like me to stay also but was OK with me going home. Again hopefully the hospital stay won't be but a couple of days.
Tom's friend Dennis came by to visit yesterday. We are so blessed that our friends will drop everything to check on us! It means so much to Tom!
We hope everyone is enjoying this Christmas season and remembering its true meaning - the blessed birth of Christ our Savior. There are many churches offering special services, I encourage you to attend one or more. Christmas music is the most beautiful music!
The infection seems to be some type of cellulitis. I asked the doctor how Tom got the infection - was it something he did, ate, went, etc. The doc said no. Tom had been feeling really well so he'd been out and about and doing more at home. He was up on his feet a lot more and his lower legs had started to swell some. The doctor said that when your legs are swollen, the blood cannot circulate as well and it's much easier for an infection to take up residence. Apparently that is what happened. Tom's right leg is very swollen, very red, warm and extremely painful. It wasn't much better this morning so hopefully some more antibiotic will help that quickly. Dr. Rutland has requested an infectious disease specialist to see Tom today so maybe we'll get even more information - better yet - a quicker resolution. Dr. Dunn, the kidney doc, is also checking in on Tom to make sure the antibiotic doesn't upset the kidneys. This morning, they still looked good.
Overall, Tom's blood tests continue to look great. I did call the UAB Liver Center this morning and left a message to let them know Tom was in the hospital here. I just want to make sure they know what is going on. We still have plans to see them on Dec. 21st. If Tom is sick, I'd at least like the blood tests to show that - so he could move back up on the transplant list! At least the leg infection seems to be the only problem so hopefully it can get resolved without any other issues arising.
I am not staying at the hospital - at least so far. I'd like to stay but it is so much easier not to lug my stuff back and forth and worry about care for the puppies. It is more restful too. Tom would like me to stay also but was OK with me going home. Again hopefully the hospital stay won't be but a couple of days.
Tom's friend Dennis came by to visit yesterday. We are so blessed that our friends will drop everything to check on us! It means so much to Tom!
We hope everyone is enjoying this Christmas season and remembering its true meaning - the blessed birth of Christ our Savior. There are many churches offering special services, I encourage you to attend one or more. Christmas music is the most beautiful music!
Wednesday, November 23, 2011
MELD SCORE 13!
OK, one more update!
Just confirmed that the UAB Liver Center (finally) has all of the blood test results they need (Praise the Lord) and Tom's MELD score has dropped to 13. While this is a great thing it just means we have a long wait if he is going to get a liver. Who knows, maybe he'll continue to get better and won't need one after all !?!?!?
The biggest change was in the blood clotting factors which the liver makes and his must be doing a good job because the results are a full point lower than they were a month ago - which is great. The docs are a bit concerned about his anemia so he's going to start taking folic acid today and may need a blood transfusion in the next week or so - hopefully not this week but if it's necessary, that's what we'll do. It would just require Tom to go to the hospital for a couple of hours. Tom's kidney doctor made the transfusion recommendation, his gastroenterologist is being informed and the coordinator at the UAB Liver Center is also going to ask the transplant doctors what they think.
Tom will not need to have the next blood results reported for the wait list until February 23!
Just confirmed that the UAB Liver Center (finally) has all of the blood test results they need (Praise the Lord) and Tom's MELD score has dropped to 13. While this is a great thing it just means we have a long wait if he is going to get a liver. Who knows, maybe he'll continue to get better and won't need one after all !?!?!?
The biggest change was in the blood clotting factors which the liver makes and his must be doing a good job because the results are a full point lower than they were a month ago - which is great. The docs are a bit concerned about his anemia so he's going to start taking folic acid today and may need a blood transfusion in the next week or so - hopefully not this week but if it's necessary, that's what we'll do. It would just require Tom to go to the hospital for a couple of hours. Tom's kidney doctor made the transfusion recommendation, his gastroenterologist is being informed and the coordinator at the UAB Liver Center is also going to ask the transplant doctors what they think.
Tom will not need to have the next blood results reported for the wait list until February 23!
THIRD BLOOD TEST!
Yes, third!!
Tom has now made three trips to his doctors office to get the required blood work submitted TODAY or he falls to a MELD score of 6 on the transplant list (which is bad). Apparently on the second trip they only ran the tests they didn't get the first time. All of the tests have to be run on the same day so that required the third trip. He also had a dentist appointment yesterday afternoon to get the permanent crowns. He called me and asked if I could come and get him. He thought he would have enough strength to get to one appointment, but not both. So I left work and shuttled him back and forth yesterday afternoon. I will be following up this morning with his doctors office to verify they fax the test results and then follow up with the Liver Center to make sure they have everything they need. If they don't, I have no idea what we're going to do. I'm praying like crazy they have everything they need. The benefit of getting them run a third time is that I had requested they check Tom's ammonia level and they were going to do that this time. They checked his potassium level and it is normal.
For those of you who think you're the only one who has days like this, you can thank us because you are not alone - ever. And, for those of you who never have days like this, you can thank us too - the reason it never happens to you is because it's always happening to us! :-)
Anyway, I asked Tom's nurse if one of the doctors could review his blood test results just to make sure everything looked OK - this being a holiday weekend and all. His PCP is off this week. Dr. Miller, his gastroenterologist, called yesterday and told me everything looked good, which of course is great news. Dr. Miller was shocked at how good the kidney numbers were. He said that Tom's bilirubin was a little high and his albumin is low and he's also anemic (which is hard to believe because he is taking 3 iron pills daily). The bilirubin and albumin are 2 of the 5 tests make up the MELD score. I kind of hope it at least stays where it is or even goes up a little but I'm thinking it will go down and we'll be waiting longer.
We finally have the clearance letter from the dentist so I'll fax that this morning. Tom has an appointment at the UAB Liver Center on Dec. 21. He is supposed to see his PCP on the 15th so I'm going to get that changed to the week of the 5th, if possible, to make sure someone is seeing Tom every 2 weeks. That makes me feel a lot better.
We pray you will all have a Happy Thanksgiving. We are thankful for you!
Tom has now made three trips to his doctors office to get the required blood work submitted TODAY or he falls to a MELD score of 6 on the transplant list (which is bad). Apparently on the second trip they only ran the tests they didn't get the first time. All of the tests have to be run on the same day so that required the third trip. He also had a dentist appointment yesterday afternoon to get the permanent crowns. He called me and asked if I could come and get him. He thought he would have enough strength to get to one appointment, but not both. So I left work and shuttled him back and forth yesterday afternoon. I will be following up this morning with his doctors office to verify they fax the test results and then follow up with the Liver Center to make sure they have everything they need. If they don't, I have no idea what we're going to do. I'm praying like crazy they have everything they need. The benefit of getting them run a third time is that I had requested they check Tom's ammonia level and they were going to do that this time. They checked his potassium level and it is normal.
For those of you who think you're the only one who has days like this, you can thank us because you are not alone - ever. And, for those of you who never have days like this, you can thank us too - the reason it never happens to you is because it's always happening to us! :-)
Anyway, I asked Tom's nurse if one of the doctors could review his blood test results just to make sure everything looked OK - this being a holiday weekend and all. His PCP is off this week. Dr. Miller, his gastroenterologist, called yesterday and told me everything looked good, which of course is great news. Dr. Miller was shocked at how good the kidney numbers were. He said that Tom's bilirubin was a little high and his albumin is low and he's also anemic (which is hard to believe because he is taking 3 iron pills daily). The bilirubin and albumin are 2 of the 5 tests make up the MELD score. I kind of hope it at least stays where it is or even goes up a little but I'm thinking it will go down and we'll be waiting longer.
We finally have the clearance letter from the dentist so I'll fax that this morning. Tom has an appointment at the UAB Liver Center on Dec. 21. He is supposed to see his PCP on the 15th so I'm going to get that changed to the week of the 5th, if possible, to make sure someone is seeing Tom every 2 weeks. That makes me feel a lot better.
We pray you will all have a Happy Thanksgiving. We are thankful for you!
Monday, November 21, 2011
THANKFUL
Yes, we are thankful - for so many people: family, friends and strangers whose prayers have carried us through this most difficult year!
The sermon in church yesterday was about thankfulness. We are to be thankful for the good things and the trials. So, on my list, I thank God for Tom's illness and for our suffering. It has brought us closer together and allowed us the privilege of being cared for by so many wonderful people.
Tom is really doing well. He had two doctors appointments last week. We are waiting for the blood tests results from both which will be sent to the UAB Liver Center to be submitted to the National Registry. His results are required to be submitted on the 24th. Based on the results from two weeks ago, if these are anything like those, Tom's MELD score will be lower which means he will move down the list. This means he is feeling better but the wait for a liver will be longer. It has been reallly nice to have him feeling so much better for the past 4 weeks. He is getting stronger each day, and doesn't use the walker nearly as much. He goes out on his own from time to time and even cleaned the family room carpet over two days last week (not that it was that much work, it was just that filthy)!
We are looking forward to Thanksgiving in Nashville. We will go out to dinner on Thursday but Tom is still planning to fry a turkey at some point this week. As long as he is strong enough to handle the set-up and clean-up, that's OK with me! I think the steroids Tom is on make him really hungry because he is eating like crazy - lots of grapes but also lots of Ben & Jerry's frozen yogurt!
I have moved our suitcases out of the kitchen now so if the Transplant Center calls, it will be an ordeal to get everything back together. We would very much like to have all of this behind us but each day we wait is an opportunity for Tom to get even stronger so he has been working hard to do just that.
We wish you all a wonderful Thanksgiving!
To God be the Glory!
The sermon in church yesterday was about thankfulness. We are to be thankful for the good things and the trials. So, on my list, I thank God for Tom's illness and for our suffering. It has brought us closer together and allowed us the privilege of being cared for by so many wonderful people.
Tom is really doing well. He had two doctors appointments last week. We are waiting for the blood tests results from both which will be sent to the UAB Liver Center to be submitted to the National Registry. His results are required to be submitted on the 24th. Based on the results from two weeks ago, if these are anything like those, Tom's MELD score will be lower which means he will move down the list. This means he is feeling better but the wait for a liver will be longer. It has been reallly nice to have him feeling so much better for the past 4 weeks. He is getting stronger each day, and doesn't use the walker nearly as much. He goes out on his own from time to time and even cleaned the family room carpet over two days last week (not that it was that much work, it was just that filthy)!
We are looking forward to Thanksgiving in Nashville. We will go out to dinner on Thursday but Tom is still planning to fry a turkey at some point this week. As long as he is strong enough to handle the set-up and clean-up, that's OK with me! I think the steroids Tom is on make him really hungry because he is eating like crazy - lots of grapes but also lots of Ben & Jerry's frozen yogurt!
I have moved our suitcases out of the kitchen now so if the Transplant Center calls, it will be an ordeal to get everything back together. We would very much like to have all of this behind us but each day we wait is an opportunity for Tom to get even stronger so he has been working hard to do just that.
We wish you all a wonderful Thanksgiving!
To God be the Glory!
Wednesday, November 9, 2011
CROWNS
Tom went to Dr. Rutland for a follow-up appointment on Monday morning. Apparently things are good because we haven't heard from them! That would mean that the potassium level is back in line. The scales indicated that Tom lost 20 lbs over the weekend so that is a bit of a concern. Dr. Rutland requested Tom make an appointment with Dr. Dunn (kidneys) just to make sure the weight loss is not upsetting the kidneys - even though the kidney numbers looked good.
Tom already had an appointment scheduled with Dr. Dunn for next week. We tried to move that to this week but there were no openings.
I am currently waiting on calls from Dr. Rutland to verify that Monday's blood tests were OK and from the UAB Liver Center to verify that they received the new labs and to find out if, by chance, they moved Tom further up the waiting list. I also want them to know about the weight loss. It does not seem that Tom is dehydrated and he's eating like a horse so hopefully it is just the excess fluid. He is getting around so much better now.
One of the other items that the Transplant process "recommends" but does not require is clearance from Tom's dentist. Well, Tom didn't really have a dentist . . . until yesterday. I made him an appointment at my dentist and 4 hours later, Tom emerged with two temporary crowns, two replaced fillings and an appointment for next week. Kudos to Dr. Rick King and staff in Hillsboro Village for rearranging their schedule to go ahead and do all of that work yesterday, for finding a lab that can make the permanent crowns in one week instead of two, and rearranging their schedule for next week so that Tom and I can go a the same time to have our teeth cleaned and Tom can have the permanent crowns "installed". Once that is done, Tom will have the clearance letter from his new dentist!
Needless to say, he had a long day yesterday but was quite the trooper. I know all of that work had to hurt!
Tom continues to do well with Physical Therapy. He has it three times again this week. I have been helping him with some of his exercises and he's doing better than I expected. I hope he can keep improving his strength - I would love to see him stop using the walker really soon!
There's not much more to say at this point. We continue to wait and pray.
Tom already had an appointment scheduled with Dr. Dunn for next week. We tried to move that to this week but there were no openings.
I am currently waiting on calls from Dr. Rutland to verify that Monday's blood tests were OK and from the UAB Liver Center to verify that they received the new labs and to find out if, by chance, they moved Tom further up the waiting list. I also want them to know about the weight loss. It does not seem that Tom is dehydrated and he's eating like a horse so hopefully it is just the excess fluid. He is getting around so much better now.
One of the other items that the Transplant process "recommends" but does not require is clearance from Tom's dentist. Well, Tom didn't really have a dentist . . . until yesterday. I made him an appointment at my dentist and 4 hours later, Tom emerged with two temporary crowns, two replaced fillings and an appointment for next week. Kudos to Dr. Rick King and staff in Hillsboro Village for rearranging their schedule to go ahead and do all of that work yesterday, for finding a lab that can make the permanent crowns in one week instead of two, and rearranging their schedule for next week so that Tom and I can go a the same time to have our teeth cleaned and Tom can have the permanent crowns "installed". Once that is done, Tom will have the clearance letter from his new dentist!
Needless to say, he had a long day yesterday but was quite the trooper. I know all of that work had to hurt!
Tom continues to do well with Physical Therapy. He has it three times again this week. I have been helping him with some of his exercises and he's doing better than I expected. I hope he can keep improving his strength - I would love to see him stop using the walker really soon!
There's not much more to say at this point. We continue to wait and pray.
Sunday, November 6, 2011
A TRIP TO THE DOCTOR
Thursday night I noticed Tom's ammonia level might be going up again. He also seemed a little more lethargic. So, I pretty much decided we were going to get up Friday morning and head to Birmingham. Even though Tom had a doctors appointment scheduled with his PCP here in Nashville on Monday, I know what a difference 2 days can make - especially on the weekend. Tom, of course, didn't want any part of it for fear he would end up in the hospital again.
On Friday morning, he got up announcing how good he felt. I told him that was a lame attempt to call me off but I didn't bite. I called the UAB Liver Center at 8 a.m. only to be told that ALL of the medical doctors were in California at a conference. Did I tell you ALL of his doctors were there?!?!? Basically, the person at the Liver Center told me if we came down we should go to the ER but she didn't really have anyone who could see him. I asked what happened if a liver became available - she said the surgeons were there but they wouldn't "see" Tom on just a regular office visit. This is the kind of luck Tom and I tend to have.
So, my next call was to his PCP here in Nashville to see if there was any way I could get Tom in that day. There was a 4 pm appointment available. I told the nurse I wanted Tom to have his blood checked because if something was not right, I wanted to be able to take him to UAB if he needed to be admitted to the hospital. After a few minutes on hold, she told me to be there at 11:30. We were seen by Dr. Rutland right on time. They drew blood right there in the office (we didn't even have to go to the lab which was just one floor down). Dr. Rutland also had them draw enough to send all of the required labs to the UAB Liver Center. If these results are worse, they will submit them and Tom will move up the list. So, I'm kind of hoping the results are just a little worse to help his cause. Dr. Rutland told us he also wanted us to keep the Monday appointment (which is now at 9:15 am). He was very "on the ball" about assessing Tom's condition. He also told us three times before leaving the office that if anything came up over the weekend to be sure to call or go to the Emergeny Room. I told Tom I really liked this kind of attention!
Dr. Rutland called a couple of hours later and told us Tom's potassium level was high. He called in an RX and also told him to stop taking one of the diuretics. Tom has lost about 30 lbs since he got home from UAB! We will be back at the doctor in the morning - probably for more blood work.
In the meantime, things seem a little better. Tom, the puppies and I walked up the street and back yesterday. Today when I got home from church, he suggested we go out to lunch!
I've mentioned before that from the beginning of Tom's illness, I have told myself (and others) "one day at a time". My devotion for Friday morning was "one step at a time". Every time I tried to plan out the day, whether to get to Birmingham early or late, what to do with the dogs, etc. God changed things and it required me to focus on "one step at a time". Things did work out and hopefully they will improve Tom's chances overall. I was not liking my life at all on Friday. Although I didn't have time for the "why me?" pity party, I did have a conversation with God that went something like "God, I don't know what you are trying to teach me in all of this but it's not working and I'm not getting it so I think You should give up and try teaching me something different and maybe a little easier". We'll see what happens.
This morning, our Sunday School lesson was on Suffering. Does God cause suffering?, why does God allow suffering? Of course some suffering is caused by human sin, other suffering is caused by nature. The Bible does not promise us a "perfect life". Christ suffered also. We may never know these answers this side of Heaven. The great news is that God is with us during our suffering, just as He was with Christ when He suffered on the Cross. I can't imagine going through this without God and the knowledge that He will always be with me. It's also obvious that God speaks to us through devotions, Sunday School teachers and lessons and of course, the Bible.
So we will "press on" not just on one day at a time, but one step at a time.
I'll be following up with the UAB Transplant Coordinator on Tuesday to verify that the blood test results have been received. Hopefully she will be able to tell me at that time if they raised Tom's MELD score. The docs are supposed to return on Wednesday.
On Friday morning, he got up announcing how good he felt. I told him that was a lame attempt to call me off but I didn't bite. I called the UAB Liver Center at 8 a.m. only to be told that ALL of the medical doctors were in California at a conference. Did I tell you ALL of his doctors were there?!?!? Basically, the person at the Liver Center told me if we came down we should go to the ER but she didn't really have anyone who could see him. I asked what happened if a liver became available - she said the surgeons were there but they wouldn't "see" Tom on just a regular office visit. This is the kind of luck Tom and I tend to have.
So, my next call was to his PCP here in Nashville to see if there was any way I could get Tom in that day. There was a 4 pm appointment available. I told the nurse I wanted Tom to have his blood checked because if something was not right, I wanted to be able to take him to UAB if he needed to be admitted to the hospital. After a few minutes on hold, she told me to be there at 11:30. We were seen by Dr. Rutland right on time. They drew blood right there in the office (we didn't even have to go to the lab which was just one floor down). Dr. Rutland also had them draw enough to send all of the required labs to the UAB Liver Center. If these results are worse, they will submit them and Tom will move up the list. So, I'm kind of hoping the results are just a little worse to help his cause. Dr. Rutland told us he also wanted us to keep the Monday appointment (which is now at 9:15 am). He was very "on the ball" about assessing Tom's condition. He also told us three times before leaving the office that if anything came up over the weekend to be sure to call or go to the Emergeny Room. I told Tom I really liked this kind of attention!
Dr. Rutland called a couple of hours later and told us Tom's potassium level was high. He called in an RX and also told him to stop taking one of the diuretics. Tom has lost about 30 lbs since he got home from UAB! We will be back at the doctor in the morning - probably for more blood work.
In the meantime, things seem a little better. Tom, the puppies and I walked up the street and back yesterday. Today when I got home from church, he suggested we go out to lunch!
I've mentioned before that from the beginning of Tom's illness, I have told myself (and others) "one day at a time". My devotion for Friday morning was "one step at a time". Every time I tried to plan out the day, whether to get to Birmingham early or late, what to do with the dogs, etc. God changed things and it required me to focus on "one step at a time". Things did work out and hopefully they will improve Tom's chances overall. I was not liking my life at all on Friday. Although I didn't have time for the "why me?" pity party, I did have a conversation with God that went something like "God, I don't know what you are trying to teach me in all of this but it's not working and I'm not getting it so I think You should give up and try teaching me something different and maybe a little easier". We'll see what happens.
This morning, our Sunday School lesson was on Suffering. Does God cause suffering?, why does God allow suffering? Of course some suffering is caused by human sin, other suffering is caused by nature. The Bible does not promise us a "perfect life". Christ suffered also. We may never know these answers this side of Heaven. The great news is that God is with us during our suffering, just as He was with Christ when He suffered on the Cross. I can't imagine going through this without God and the knowledge that He will always be with me. It's also obvious that God speaks to us through devotions, Sunday School teachers and lessons and of course, the Bible.
So we will "press on" not just on one day at a time, but one step at a time.
I'll be following up with the UAB Transplant Coordinator on Tuesday to verify that the blood test results have been received. Hopefully she will be able to tell me at that time if they raised Tom's MELD score. The docs are supposed to return on Wednesday.
Wednesday, November 2, 2011
MID-WEEK UPDATE
As previously mentioned, being at home doesn't provide much to chat about so I'm not posting as often as I do when Tom is in the hospital. Hopefully these occasional posts will continue - at least until we get "the call".
So, we're still waiting on "the call" for a liver. Tom is doing great at home - mostly on his own. PT is coming 3 times this week. Bob, a friend and fellow Sunday School class member, came over and spent some time with Tom yesterday. I may work from home a few hours tomorrow (Thursday). While he is doing this well, I am logging as many hours at the office as possible. Besides, the puppies drive me crazy!
Tom's friends from work, Dave and David, came over Sunday and built a new ramp at the back door. Many years ago, Tom built a ramp for Maxie when it became difficult for her to get up the steps. After Maxie died, we kept the ramp but it was beginning to rot. The new one is much longer so we're all trying to get used to it.
Tom's doctors appointment with his PCP here in Nashville is Monday afternoon. We're anxious to get blood tests done to see if they will bump Tom up on the list.
Please join us in praying that "the call" will come soon!
So, we're still waiting on "the call" for a liver. Tom is doing great at home - mostly on his own. PT is coming 3 times this week. Bob, a friend and fellow Sunday School class member, came over and spent some time with Tom yesterday. I may work from home a few hours tomorrow (Thursday). While he is doing this well, I am logging as many hours at the office as possible. Besides, the puppies drive me crazy!
Tom's friends from work, Dave and David, came over Sunday and built a new ramp at the back door. Many years ago, Tom built a ramp for Maxie when it became difficult for her to get up the steps. After Maxie died, we kept the ramp but it was beginning to rot. The new one is much longer so we're all trying to get used to it.
Tom's doctors appointment with his PCP here in Nashville is Monday afternoon. We're anxious to get blood tests done to see if they will bump Tom up on the list.
Please join us in praying that "the call" will come soon!
Friday, October 28, 2011
GETTING STRONGER
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!
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!
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.
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