We did not hear from UAB following Monday's meeting, so I called yesterday. What they told me was they were very impressed with how well Tom was doing and how his leg was healing. They want to see him again in a month and will assess him again at that time. I asked if they were looking for him to be able to do something specific . . . they just told me they wanted him to get stronger. I read between the lines that they wanted him walking - with very little or no assistance (i.e. cane). Tom disagrees and thinks a walker will be fine. I will ask that you pray for Tom, that he will get stronger and will be able to walk unassisted into UAB on September 12! We are disappointed though that they did not re-activate him. My devotions this week have been about control - God's and not mine. I'm trying to be faithful and trust God with Tom's care.
Other than that, we have been managing pretty well on our own. Tom had a fever on Monday so he started taking the Bactrim again. His temp was normal on Tuesday. I will continue to give him the Bactrim daily. He was also starting to accumulate fluid so he's taking Lasix again. We'll monitor that closely to keep him from getting dehydrated again. Home Health is supposed to come and do bloodwork early next week.
Tom has been getting Physical Therapy and has been doing a few things around the house. He needs to move around but he also needs to stay off his feet to keep them from getting too swollen. On Sunday he made the very best homemade pound cake I have ever tasted. It's working too because I've gained about 2 pounds this week! The contractor arranged for the dumpster to be picked up this week so we spent most of last weekend in the garage, tossing out a bunch of stuff. I also pulled "junk" down from the attic! It was a great feeling! The painter has been at the house every day this week and will hopefully wrap up soon - we still have lots of boxes to unpack! I still haven't shopped for a backsplash - I keep thinking I will have time on the weekend but I don't like leaving Tom alone for long periods of time (over an hour).
I'm excited that my parents are coming next week to help. Tom's caregivers are wonderful but they are expensive! They've done a great job taking care of Tom, cleaning the house, lining the new kitchen cabinets and Wednesday, Kim (our regular caregiver) cleaned the carpets upstairs!!! They don't like sitting idle. Sometimes it's hard for me to think of things for them to do! Kim doesn't like ironing so that's the only thing I've found so far that she wouldn't do. A caregiver will come Saturday morning so that I can go for a bike ride. I don't like having someone come on the weekend but I really need to ride. Tomorrow we are going to ride 50 miles. I know Tom would do OK but since I'm going to be out-of-touch, it's worth it for my peace of mind.
I'll wrap up for now. Thanks for checking the blog and praying for us!
Friday, August 24, 2012
Thursday, August 16, 2012
TO BIRMINGHAM AND BACK
Just quickly - to update you on our trip to Birmingham yesterday . . .
Tom saw the surgeon, although it was not Dr. Eckhoff. It was actually Dr. Gray, who did his Denver Shunt surgery in January and was the first surgeon we met when Tom was going through the transplant evaluation process. Tom's sister Cathy and I really, really like Dr. Gray! Anyway, he was impressed with the healing in Tom's leg and with how Tom looked overall. I will also mention here that both Dr. White, the Resident, and Dr. Gray knew about Tom's recent hospital stays and had already reviewed his previous blood test results - I guess some information from Nashville really is getting to Birmingham. I don't know whether it is coming from the Blue Cross Transplant Coordinator or Dr. Rutland. I was very happy they were aware of all of it though.
If you've forgotten how things work with the UAB Transplant Team or if you're new to this, our long road, the Transplant Team makes all of their decisions "as a Team" and they always meet on Monday. So, the Team will meet on Monday to discuss whether to re-activate Tom. (Because of the leg wound and the wound vac, Tom had been moved to "inactive" status). Now, Dr. Gray did say he didn't think it would be a problem - however, you usually don't get "listed" unless your MELD score is at least 15. Tom's blood tests from yesterday were calculated at a MELD of 12. Of course, that number can change so being activated is first and foremost. Dr. Gray is also going to talk to the team about petitioning to the region to some exception points to get Tom to a 15. The transplant region votes on awarding exception points and the UAB team would not have a vote since Tom is their patient. I don't know when this would happen. Right now, we just ask for your prayers for Monday's meeting.
The two things that Dr. White and Dr. Gray emphasized yesterday were diet (low sodium - because of Tom's fluid retention issues) and activity. Activity is a very big deal. When Tom was going though the evaluation process, Dr. Eckhoff looked at him and said "I want to see you walk into my office". Tom could barely walk to the door of his hospital room at that time but within a few days, he was circling the "block" in the hospital hallway. As I've mentioned previously, Tom has really struggled with his walking since this leg wound and yesterday, they wanted to see him walk. I just about panicked! They couldn't find a walker for Tom to use so they decided to use the wheelchair. Tom got right up and headed down the hall with the Resident and another student doctor. They were gone for a really long time. A while later they came around the corner from the other direction - Tom had walked "around the block" - and did GREAT! I was impressed!
Overall, the day went as well as it could have. Tom even said last night that he felt like he got more information from this visit than he had through the entire process so far. He was also more alert and healthy on this trip than in previous trips - both Dr. White and Dr. Gray mentioned that to him.
Aside from the 6 HOURS it took for us to get home: including a stop to get some soda Tom likes that is only available in Alabama, a bathroom break and 2 hours of sitting still on the interstate because of a wreck, it was a good day. I haven't felt this relieved in a long time. Tom did all he could do for his part and that's all we could have hoped and prayed for.
OK, so that wasn't quick. Thanks to all who prayed for us, e-mailed us and texted me yesterday. God heard and answered.
Tom saw the surgeon, although it was not Dr. Eckhoff. It was actually Dr. Gray, who did his Denver Shunt surgery in January and was the first surgeon we met when Tom was going through the transplant evaluation process. Tom's sister Cathy and I really, really like Dr. Gray! Anyway, he was impressed with the healing in Tom's leg and with how Tom looked overall. I will also mention here that both Dr. White, the Resident, and Dr. Gray knew about Tom's recent hospital stays and had already reviewed his previous blood test results - I guess some information from Nashville really is getting to Birmingham. I don't know whether it is coming from the Blue Cross Transplant Coordinator or Dr. Rutland. I was very happy they were aware of all of it though.
If you've forgotten how things work with the UAB Transplant Team or if you're new to this, our long road, the Transplant Team makes all of their decisions "as a Team" and they always meet on Monday. So, the Team will meet on Monday to discuss whether to re-activate Tom. (Because of the leg wound and the wound vac, Tom had been moved to "inactive" status). Now, Dr. Gray did say he didn't think it would be a problem - however, you usually don't get "listed" unless your MELD score is at least 15. Tom's blood tests from yesterday were calculated at a MELD of 12. Of course, that number can change so being activated is first and foremost. Dr. Gray is also going to talk to the team about petitioning to the region to some exception points to get Tom to a 15. The transplant region votes on awarding exception points and the UAB team would not have a vote since Tom is their patient. I don't know when this would happen. Right now, we just ask for your prayers for Monday's meeting.
The two things that Dr. White and Dr. Gray emphasized yesterday were diet (low sodium - because of Tom's fluid retention issues) and activity. Activity is a very big deal. When Tom was going though the evaluation process, Dr. Eckhoff looked at him and said "I want to see you walk into my office". Tom could barely walk to the door of his hospital room at that time but within a few days, he was circling the "block" in the hospital hallway. As I've mentioned previously, Tom has really struggled with his walking since this leg wound and yesterday, they wanted to see him walk. I just about panicked! They couldn't find a walker for Tom to use so they decided to use the wheelchair. Tom got right up and headed down the hall with the Resident and another student doctor. They were gone for a really long time. A while later they came around the corner from the other direction - Tom had walked "around the block" - and did GREAT! I was impressed!
Overall, the day went as well as it could have. Tom even said last night that he felt like he got more information from this visit than he had through the entire process so far. He was also more alert and healthy on this trip than in previous trips - both Dr. White and Dr. Gray mentioned that to him.
Aside from the 6 HOURS it took for us to get home: including a stop to get some soda Tom likes that is only available in Alabama, a bathroom break and 2 hours of sitting still on the interstate because of a wreck, it was a good day. I haven't felt this relieved in a long time. Tom did all he could do for his part and that's all we could have hoped and prayed for.
OK, so that wasn't quick. Thanks to all who prayed for us, e-mailed us and texted me yesterday. God heard and answered.
Tuesday, August 14, 2012
Tom is home again
Tom arrived back home yesterday afternoon. He was once again happy, happy, happy to be out of the hospital (so was I)! I miss having the help of his sisters at home but today one of the care givers is at home helping him out. He is really wanting to "get out of the house" but I asked him to try and take it easy today. Tomorrow is his appointment with Dr. Eckhoff in Birmingham so it will be a very long day and will be tiring for him.
The painter was at the house yesterday and will be there most of the day tomorrow. I keep adding to his "to do" list but I'll never get it done. I haven't been able to shop for a backsplash yet so who knows when that will get done. I've not picked out a paint color for the powder room either. Maybe I can hire someone to do those things too!
The pups are super-excited to have Tom home. They were both asleep on his legs last night, I had to move them twice to change the bandage on Tom's leg and to help him get to bed. I'm guessing that's where they will spend most of their day today as well.
Please pray for a safe trip tomorrow and that Dr. Eckhoff is satisfied with the healing of Tom's wound. Hopefully his blood counts will still be stable.
The painter was at the house yesterday and will be there most of the day tomorrow. I keep adding to his "to do" list but I'll never get it done. I haven't been able to shop for a backsplash yet so who knows when that will get done. I've not picked out a paint color for the powder room either. Maybe I can hire someone to do those things too!
The pups are super-excited to have Tom home. They were both asleep on his legs last night, I had to move them twice to change the bandage on Tom's leg and to help him get to bed. I'm guessing that's where they will spend most of their day today as well.
Please pray for a safe trip tomorrow and that Dr. Eckhoff is satisfied with the healing of Tom's wound. Hopefully his blood counts will still be stable.
Friday, August 10, 2012
MUCH BETTER
Tom has improved immensely in the past two days. Both his ammonia level and potassium levels are back in the normal range. His white blood cell count continues to climb so they are looking for potential sources of infection - you must be as tired of hearing that as I am of typing it. We never know where the infection is but it does cause a lot of problems. He is still somewhat dehydrated and is nervous about the IV fluids he is continuing to receive. I have assured him that Dr. Rutland is on top of the situation.
He is slowly regaining his appetite and has received physical therapy - yipee. He only got up once yesterday. He still feels tired and achy so I wasn't able to get him up on his feet last night. Dr. Miller is looking in on him as well so it's good to have another set of eyes. Both Dr. Rutland and Dr. Miller are aware that Tom has an appointment at UAB on Wednesday so they are doing everything they can to get Tom better so he can make that trip.
Tom is thinking more clearly today and is not agitated - except for the fact that he is in a hospital and that would make most anyone a bit agitated. The dogs miss him and the freedom they had of running in and out all day. Our neighbor has once again jumped into puppy duty and our painter has even let the dogs out too.
Getting to Birmingham is very important - I ask that you pray for all things to come together so he can get there.
He is slowly regaining his appetite and has received physical therapy - yipee. He only got up once yesterday. He still feels tired and achy so I wasn't able to get him up on his feet last night. Dr. Miller is looking in on him as well so it's good to have another set of eyes. Both Dr. Rutland and Dr. Miller are aware that Tom has an appointment at UAB on Wednesday so they are doing everything they can to get Tom better so he can make that trip.
Tom is thinking more clearly today and is not agitated - except for the fact that he is in a hospital and that would make most anyone a bit agitated. The dogs miss him and the freedom they had of running in and out all day. Our neighbor has once again jumped into puppy duty and our painter has even let the dogs out too.
Getting to Birmingham is very important - I ask that you pray for all things to come together so he can get there.
Wednesday, August 8, 2012
Another trip to the ER
First of all, I appreciate those of you who have been checking but have found no update. I do hope you continue to keep Tom in your prayers. The truth is, we have been very busy. Tom has been home for 10 days and with just one hiccup was doing pretty well . . . until yesterday. Tom was sluggish and a bit confused when I got home from work. I tried to convince him to try and get to the truck so we could go to UAB but he didn't want any part of that. I told him once he became unresponsive, I was calling the paramedics which I did at 5 am this morning. Tm spent a better part of today in the ER waiting on a room. His potassium and ammonia levels are pretty high and he was dehydrated. All are being corrected and he is much more alert this evening but still pretty agitated and a little confused.
Dr. Rutland came in a little while ago, I told him we needed to get with the program and get Tom out of here so he could make his appointment in Birmingham next Wednesday! I told Tom that he needed to stay in bed today but tomorrow he needed to get up and do some walking, he agreed!
We've had the pleasure of visits from both of Tom's sisters since he has been home from rehab. They have cooked, cleaned, unpacked and helped immensely with Tom's care. Tom's birthday was this past Friday and our neighbors brought over a fantastic strawberry cake! Thanks to all of the help, our house is getting put together slowly. Tom's sister, Debbie, even helped Tom clean out his closet! I think the new kitchen has been used more this past week than our old kitchen was in 17 years! The painter was at home today and his to do list gets longer and longer. Tom's sister, Cathy, helped us pick out a color for the kitchen - I think that's been the toughest remodeling decision!
Won't rattle on any more at this point. Please pray for Tom.
Dr. Rutland came in a little while ago, I told him we needed to get with the program and get Tom out of here so he could make his appointment in Birmingham next Wednesday! I told Tom that he needed to stay in bed today but tomorrow he needed to get up and do some walking, he agreed!
We've had the pleasure of visits from both of Tom's sisters since he has been home from rehab. They have cooked, cleaned, unpacked and helped immensely with Tom's care. Tom's birthday was this past Friday and our neighbors brought over a fantastic strawberry cake! Thanks to all of the help, our house is getting put together slowly. Tom's sister, Debbie, even helped Tom clean out his closet! I think the new kitchen has been used more this past week than our old kitchen was in 17 years! The painter was at home today and his to do list gets longer and longer. Tom's sister, Cathy, helped us pick out a color for the kitchen - I think that's been the toughest remodeling decision!
Won't rattle on any more at this point. Please pray for Tom.
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