Well, things were humming along and even though Tom's ammonia level rose to 140 this week, that was coming down - we were so happy to be able to deal with that at home. It was tough, but we were getting somewhere. This morning, however, Tom was having a lot of back pain and it got to the point whe he couldn't even stand with assistance from his lift chair. After trying for quite a while, we both agreed he needed to go to the hospital. So, a trip to the ER and Tom will be in the hospital for a few days. X-rays don't show anything other than some degeneration and previous compression fractures. Dr. Richards seems to think it is more muscle pain. Because of the condition of his liver and his elevated ammonia level, they cannot really give him any "good" pain medicine. Since he cannot get up and down, home is not a good place for him right now.
His ammonia level is down to 99 but he is still experiencing some disorientation. So they will work on getting that back to normal. All of his other blood tests are normal (for Tom and his condition) so we are thankful for that. I don't know what they can and will do for his back, I'm sure physical therapy will be involved. I'm going to start looking for a more intense option for Tom's physical therapy. Hopefully I can get him to buy into that as well. He needs to be moving more and getting stronger. The two days a week he gets now is not enough. If anyone has any ideas, please send me an email at burnetj@bellsouth.net.
Yesterday was probably the roughest day we've had in a while. I was stressed on several levels so started the pity party routine. It didn't exactly help that my three devotions for yesterday all talked about being thankful for suffering.and being joyful. I struggled with that all night. Praise God, for the mercy he showed us today. Tom was improving from a confusion standpoint, he calmly agreed to go to the hospital, I have help caring for Tom from the doctors and nurses, I will get some sleep ,tonight, ill get to go to church tomorrow and serve my shift as an Andrew Minister and for the greatest joy, my neighbor greeted me at the door this morning with encouraging words and a bouquet of sunflowers! It's still a challenge to be thankful for suffering.
Tm is supposed to go to UAB on Wednesday. I kinda doubt we are going to make that appointment.
Again, we covet your prayers.
Saturday, October 27, 2012
Thursday, October 18, 2012
Tim's field trip . . .
. . . To the hospital.
Tom fell at home this morning. I'm not too sure what happened, I think he basically lost his balance. He was near the fireplace so he ended up with a lot of scrapes. Thankfully the Guardian unit was in place so he was able to use it. The dispatcher sent the paramedics and then called me. They told me he was ok and they had called for lift assistance. When the fire department got to the house, they saw a lot of blood and felt it would be best to take Tom to the hospital. The paramedic called me from the house and we agreed to meet at the hospital.
When Tom got there he looked a lot better than I thought. He was complaining about his ribs so the doc looked him over, determined he wouldn't need any stitches but ordered X-rays. Tom was worried about the dogs and the mess so he asked me to go home and "clean up". I wasn't sure what to expect. The paramedic told me at the hospital that the fire department had used some towels to clean up and put them in the trash. I think I want to hire the fire department to clean my house. There wasn't a drop of blood anywhere! I put the towels in the wash and mopped the floor just in case. The dogs were fine.
I called the hospital and was told the X-rays had been done but not read. I figured that would take some time so I headed to the office to get a few things and then planned to go back to the hospital. The doc had suggested they call an ambulance to take Tom home but I took the truck in case that didn't work out. I didn't even get out of the neighborhood before the hospital called back and told me to stay put. They were discharging Tom and called for an ambulance to bring him home. (I would have never been able to get him in the house by myself.)
Tom is home and in quite a bit of pain. He cannot take any strong pain reliever so it's going to be even more rough the next week or two. I'm not sure how we will manage tonight. Comfort Keepers is going to send someone for part of the day tomorrow so I'll either stay and help or head to the office for a few hours.
Praise The Lord he was not seriously hurt.
Tom fell at home this morning. I'm not too sure what happened, I think he basically lost his balance. He was near the fireplace so he ended up with a lot of scrapes. Thankfully the Guardian unit was in place so he was able to use it. The dispatcher sent the paramedics and then called me. They told me he was ok and they had called for lift assistance. When the fire department got to the house, they saw a lot of blood and felt it would be best to take Tom to the hospital. The paramedic called me from the house and we agreed to meet at the hospital.
When Tom got there he looked a lot better than I thought. He was complaining about his ribs so the doc looked him over, determined he wouldn't need any stitches but ordered X-rays. Tom was worried about the dogs and the mess so he asked me to go home and "clean up". I wasn't sure what to expect. The paramedic told me at the hospital that the fire department had used some towels to clean up and put them in the trash. I think I want to hire the fire department to clean my house. There wasn't a drop of blood anywhere! I put the towels in the wash and mopped the floor just in case. The dogs were fine.
I called the hospital and was told the X-rays had been done but not read. I figured that would take some time so I headed to the office to get a few things and then planned to go back to the hospital. The doc had suggested they call an ambulance to take Tom home but I took the truck in case that didn't work out. I didn't even get out of the neighborhood before the hospital called back and told me to stay put. They were discharging Tom and called for an ambulance to bring him home. (I would have never been able to get him in the house by myself.)
Tom is home and in quite a bit of pain. He cannot take any strong pain reliever so it's going to be even more rough the next week or two. I'm not sure how we will manage tonight. Comfort Keepers is going to send someone for part of the day tomorrow so I'll either stay and help or head to the office for a few hours.
Praise The Lord he was not seriously hurt.
Thursday, October 11, 2012
THE LONG ROAD
Yes, it's been a while. To say "I've been busy" would be an understatement, but then again, isn't everyone busy??
Tom is at home doing his best to get stronger. He still has a lot of fluid from his most recent hospital visit (Wednesday, September 26 through Wednesday, October 3). He also has a large skin tear and large gash that "appeared" while in the Emergency Room on September 26. By the time Dr. Rosen was able to get a look at this latest wound, it was too late to stitch it up. I have been trying to keep it clean and covered at home but it's on the same leg as the previous wound and near his knee so keeping a bandage on is very difficult - especially when tape cannot be used (it further tears the skin). Tom has an appointment with Dr. Rutland tomorrow afternoon so we'll get some blood tests run to see how things look.
My trip to Italy was "fantastico" - thanks for your prayers. It was good to get away and bike through Tuscany! I stayed in touch via e-mail and became concerned when Tom stopped responding. Even though my parents and Tom's sister Cathy, tried to keep the news that Tom was in the hospital a secret, I found out. It was difficult, to say the least, but I knew Tom was in good hands and where he needed to be. At the time I thought it was just his ammonia level again. But, some infection (in his other leg) might have caused his blood pressure to drop. He was sick enough to land in the ICU for a few days and the doctor told Cathy it was "hour by hour" that first Wednesday!!! We've been through this so many times, I'm not sure I would have believed it - Tom is so resilient and has such a strong will to live, it seems he can survive anything. It still breaks my heart that he has to suffer so much.
Fortunately he has been at home to watch the construction of a massive deck on the back of our house. It's much bigger than I thought it would be but it's also very nice! We struggled with the design - have a ramp or not and where to put it. Tom woke up two mornings after he got home and had the best idea yet - we new have a ramp and it actually looks integrated into the deck - not so "handicapped" looking. Today they will be removing a window in the kitchen and replacing it with a sliding glass door. This was also Tom's vision when we started the kitchen remodel. It's been good to have him take charge of these projects and see them in progress. Of course, one thing leads to another so he's moving on to new landscaping for the back yard.
Tom's MELD score is currently 17. That includes 3 exception points that he will have until January 2. I don't know if UAB can re-apply for exception points after that or not. He's still pretty low on the list with this score but we keep praying . . .
Tom has an appointment at UAB on October 31. This will just be a status appointment but at least he is getting in front of them a little more often. I'm really hoping most of this excess fluid is gone by then and he can move around a little better. I know they would like to see him walk into their office instead of using a wheelchair. That's a tall order considering what he's been through and it's a big place to navigate. I know Tom will do all he can to prove he is getting stronger.
Tom is at home doing his best to get stronger. He still has a lot of fluid from his most recent hospital visit (Wednesday, September 26 through Wednesday, October 3). He also has a large skin tear and large gash that "appeared" while in the Emergency Room on September 26. By the time Dr. Rosen was able to get a look at this latest wound, it was too late to stitch it up. I have been trying to keep it clean and covered at home but it's on the same leg as the previous wound and near his knee so keeping a bandage on is very difficult - especially when tape cannot be used (it further tears the skin). Tom has an appointment with Dr. Rutland tomorrow afternoon so we'll get some blood tests run to see how things look.
My trip to Italy was "fantastico" - thanks for your prayers. It was good to get away and bike through Tuscany! I stayed in touch via e-mail and became concerned when Tom stopped responding. Even though my parents and Tom's sister Cathy, tried to keep the news that Tom was in the hospital a secret, I found out. It was difficult, to say the least, but I knew Tom was in good hands and where he needed to be. At the time I thought it was just his ammonia level again. But, some infection (in his other leg) might have caused his blood pressure to drop. He was sick enough to land in the ICU for a few days and the doctor told Cathy it was "hour by hour" that first Wednesday!!! We've been through this so many times, I'm not sure I would have believed it - Tom is so resilient and has such a strong will to live, it seems he can survive anything. It still breaks my heart that he has to suffer so much.
Fortunately he has been at home to watch the construction of a massive deck on the back of our house. It's much bigger than I thought it would be but it's also very nice! We struggled with the design - have a ramp or not and where to put it. Tom woke up two mornings after he got home and had the best idea yet - we new have a ramp and it actually looks integrated into the deck - not so "handicapped" looking. Today they will be removing a window in the kitchen and replacing it with a sliding glass door. This was also Tom's vision when we started the kitchen remodel. It's been good to have him take charge of these projects and see them in progress. Of course, one thing leads to another so he's moving on to new landscaping for the back yard.
Tom's MELD score is currently 17. That includes 3 exception points that he will have until January 2. I don't know if UAB can re-apply for exception points after that or not. He's still pretty low on the list with this score but we keep praying . . .
Tom has an appointment at UAB on October 31. This will just be a status appointment but at least he is getting in front of them a little more often. I'm really hoping most of this excess fluid is gone by then and he can move around a little better. I know they would like to see him walk into their office instead of using a wheelchair. That's a tall order considering what he's been through and it's a big place to navigate. I know Tom will do all he can to prove he is getting stronger.
Wednesday, September 19, 2012
RE-ACTIVATED!!!!
YES! Finally Tom has been re-activated on the Liver Transplant list. His MELD score is currently a 14 which is better than it's been but not yet high enough. Dr. Eckhoff and the team have petitioned for a few more points and we should know about that in a week. Every little bit helps.
Tom had a follow-up appointment with Dr. Rutland today and it went well. A few med adjustments were made but that's it. He's lost about 12 lbs in the past week so that is great news too. When we left, we went by the medical supply store and picked up his new lift chair which wasn't supposed to come in until tomorrow. It's been a day of miracles for us!!!
Fortunately my parents arrived safely today and were here in time to help me wrestle the chair into the house. It is quite heavy. The old, very broken chair is now sitting at the curb. Hopefully Tom will sleep well in his new chair tonight (which is where he prefers to sleep).
Mom and dad and Tom's sister Cathy will be splitting time taking care of Tom while I am in Italy with 2 girl friends. We planned this trip about 15 months ago - we will be biking through Tuscany. I'm a bit nervous to be leaving for so long but I know Tom is in good hands. He spent 3 days this week at home on his own and did really well.
Please pray that Tom will continue to improve. I'll send an update when I return.
Ciao!
Jeanne
Tom had a follow-up appointment with Dr. Rutland today and it went well. A few med adjustments were made but that's it. He's lost about 12 lbs in the past week so that is great news too. When we left, we went by the medical supply store and picked up his new lift chair which wasn't supposed to come in until tomorrow. It's been a day of miracles for us!!!
Fortunately my parents arrived safely today and were here in time to help me wrestle the chair into the house. It is quite heavy. The old, very broken chair is now sitting at the curb. Hopefully Tom will sleep well in his new chair tonight (which is where he prefers to sleep).
Mom and dad and Tom's sister Cathy will be splitting time taking care of Tom while I am in Italy with 2 girl friends. We planned this trip about 15 months ago - we will be biking through Tuscany. I'm a bit nervous to be leaving for so long but I know Tom is in good hands. He spent 3 days this week at home on his own and did really well.
Please pray that Tom will continue to improve. I'll send an update when I return.
Ciao!
Jeanne
Wednesday, September 12, 2012
BIRMINGHAM TRIP
Like our last trip to Birmingham, it went as well as we could have hoped. Tom was not feeling as well this trip. He messed up his back over the weekend and with the 30-40 extra lbs of fluid he's carrying, it made him miserable.
We did meet with Dr. Eckhoff today - which made Tom pretty happy. He asked Tom to walk which concerned me because Tom's legs are so swollen. Tom got right up and walked all the way down the hall and back. You would never know his back was killing him!! I think Dr. Eckhoff was pleased. He said Tom's bloodwork looked good . . . "too good" which is, of course, good and bad. Dr. Eckhoff talked about getting Tom some extra points and even though the Region is very generous with exception points, it would probably not be enough to get Tom high on the list. Every point helps though so hopefully Tom will get a few more. The Transplant Team will meet on Monday. I expect that Tom will be re-activated - even though he will be pretty low on the list. Dr. Eckhoff said they would let us know. He also wanted to see Tom again in 3 months.
Like last time, the doctor explained how important it is for Tom to be as strong as possible before the surgery. Tom was "all in" with this. We were happy to be able to tell Dr. Eckhoff that he had been to the Y and had done some fishing and other activities to prove he wasn't just sitting around waiting on a liver.
It's been a long day and Tom is very sore and tired (me too). He is taking extra lasix to get the fluid off so we're hoping that starts working soon!
I'll let you know what we hear from the Team.
Thanks for praying for us today!
We did meet with Dr. Eckhoff today - which made Tom pretty happy. He asked Tom to walk which concerned me because Tom's legs are so swollen. Tom got right up and walked all the way down the hall and back. You would never know his back was killing him!! I think Dr. Eckhoff was pleased. He said Tom's bloodwork looked good . . . "too good" which is, of course, good and bad. Dr. Eckhoff talked about getting Tom some extra points and even though the Region is very generous with exception points, it would probably not be enough to get Tom high on the list. Every point helps though so hopefully Tom will get a few more. The Transplant Team will meet on Monday. I expect that Tom will be re-activated - even though he will be pretty low on the list. Dr. Eckhoff said they would let us know. He also wanted to see Tom again in 3 months.
Like last time, the doctor explained how important it is for Tom to be as strong as possible before the surgery. Tom was "all in" with this. We were happy to be able to tell Dr. Eckhoff that he had been to the Y and had done some fishing and other activities to prove he wasn't just sitting around waiting on a liver.
It's been a long day and Tom is very sore and tired (me too). He is taking extra lasix to get the fluid off so we're hoping that starts working soon!
I'll let you know what we hear from the Team.
Thanks for praying for us today!
Monday, September 10, 2012
BIRMINGHAM ON WEDNESDAY
Tom goes back to Birmingham on Wednesday. He is anxious about this appointment. He is stronger (as they requested) but since we don't know exactly what they are looking for, it is unsettling.
Tom had a fever last Monday and called the doctor before taking anything we already had. The doctor called in a different antibiotic and his fever broke on Wednesday. He is holding a whole lot of fluid - it seems to have come on really fast. He's been taking lasix too so I don't know if the new antibiotic has something to do with that or not. We'll see what the Birmingham docs have to say about it.
He has been out to the store a couple of times and went back to the Farmers Market on Saturday. He's also been doing some cooking. Physical Therapy is re-engaged so they've been by a couple of times as well.
We're waiting on the arrival of a new lift recliner. Last year, out of desperation, I went to Sam's and bought a $500 lift chair. It has done well but got bent/broken a couple of weeks ago. Tom and I tried to fix it but I think there is no hope. I went to the medical supply store and ordered a new chair. This one will fit Tom's height and it has two independent motors so he can raise his feet without reclining and vice versa. It also has a foot extender so his feet won't hang off the end (he's actually been putting them on an ottoman). Anyway, his current chair sits at a slight angle so that's been bothering his back (along with the extra fluid weight).
We are backing down on how much Comfort Keepers is with Tom during the day. They will be there about 4-5 hours today and tomorrow and then hopefully that will be it. Tom feels comfortable being on his own. He will have a unit that he can press that will call the paramedics in an emergency - I hope it will be installed this week.
My parents will be back next Wednesday to stay with Tom while I am out of town - actually, it will be more like they are staying with the dogs. His sister, Cathy, will also be back at the end of the month. My Sunday School class has offered to help in any way while I am gone too. What a huge blessing! I know Tom will do great and everything will be fine, the anticipation is just stressful for both of us right now.
We ask for your prayers for Wednesday's trip & visit and also that this fluid will GO AWAY!
Tom had a fever last Monday and called the doctor before taking anything we already had. The doctor called in a different antibiotic and his fever broke on Wednesday. He is holding a whole lot of fluid - it seems to have come on really fast. He's been taking lasix too so I don't know if the new antibiotic has something to do with that or not. We'll see what the Birmingham docs have to say about it.
He has been out to the store a couple of times and went back to the Farmers Market on Saturday. He's also been doing some cooking. Physical Therapy is re-engaged so they've been by a couple of times as well.
We're waiting on the arrival of a new lift recliner. Last year, out of desperation, I went to Sam's and bought a $500 lift chair. It has done well but got bent/broken a couple of weeks ago. Tom and I tried to fix it but I think there is no hope. I went to the medical supply store and ordered a new chair. This one will fit Tom's height and it has two independent motors so he can raise his feet without reclining and vice versa. It also has a foot extender so his feet won't hang off the end (he's actually been putting them on an ottoman). Anyway, his current chair sits at a slight angle so that's been bothering his back (along with the extra fluid weight).
We are backing down on how much Comfort Keepers is with Tom during the day. They will be there about 4-5 hours today and tomorrow and then hopefully that will be it. Tom feels comfortable being on his own. He will have a unit that he can press that will call the paramedics in an emergency - I hope it will be installed this week.
My parents will be back next Wednesday to stay with Tom while I am out of town - actually, it will be more like they are staying with the dogs. His sister, Cathy, will also be back at the end of the month. My Sunday School class has offered to help in any way while I am gone too. What a huge blessing! I know Tom will do great and everything will be fine, the anticipation is just stressful for both of us right now.
We ask for your prayers for Wednesday's trip & visit and also that this fluid will GO AWAY!
Tuesday, September 4, 2012
The adventure continues
It has been a long time since the last update - and a lot has happened. Tom spent most of it in the hospital again. He was admitted Sunday, August 26 and released on Friday, August 31. It was just his ammonia level this time and it seemed to come on really fast. Of course, looking back, I always see signs. I'm used to an occasional slip but another sign seems to be that he gets really irritated - which he was most of the previous weekend - and for no real reason. He was very busy that weekend. We went to the Farmers Market and then spent some time in a few shops in The Factory in Franklin. Once we got home, Tom wanted to move his ATV back into the garage (it had been covered and locked to a tree while the house was remodeled). This required me to have to move it. It is quite powerful and it scares me - but I got it back to the driveway. Tom actually got on it (with some help) and before he put it away, he rode it to the other side of the house and supervised my triming of the hedges around the air conditioning unit. I've learned to use yet another power tool! This not-too-small task netted me poison oak or sumac on my arm and ankle! Tom did a great job manuevering the ATV into the garage.
The next day, Sunday, Tom and I rode out to Kingston Springs (about an hour away) and he did some fishing. I helped bait the hook - not my thing! It was a nice day so I was glad he was able to get out. It was after we got home that he rapidly became disoriented. I tried giving him more medicine but it just got beyond my control. He ended up in the ER about 10 pm. Of course, by Monday morning, he was getting better. All they did was give him some fluid. We thought he might go home on Tuesday sometime but on Wednesday morning, his ammonia spiked again. I think it was what he ate Tuesday night. He didn't seem disoriented at all, maybe a little lethargic but he ended up spending more time in the hospital because of it. My parents had already planned to come visit and they arrived on Wednesday. It was great to have them here, even if Tom was in the hospital for most of their visit. My dad did some painting for us which was a huge help! Once Tom got home, we spent another weekend being busy. I finally unpacked the last box and hung some pictures and stuff. We also spent some quality time watching football too! Tom continues to try out new recipes in the new kitchen.
Hopefully his physical therapy will start up again this week. He has another appointment in Birmingham next week. I pray they will feel he is now strong enough. I'm sure his numbers won't be very high so we'll see what they say. Tom is on a new antibiotic that is absorbable - maybe this will help with the ammonia level. That's what his gastroenterologist is hoping. He's also been taking extra ammonia medicine. It's no fun but if it keeps him out of the hospital . . .
We continue to take things one day at a time. It's hard not to look to the future - we certainly cannot plan anything, which is disappointing. Tom could really use a vacation. I just pray he can continue to get stronger.
The next day, Sunday, Tom and I rode out to Kingston Springs (about an hour away) and he did some fishing. I helped bait the hook - not my thing! It was a nice day so I was glad he was able to get out. It was after we got home that he rapidly became disoriented. I tried giving him more medicine but it just got beyond my control. He ended up in the ER about 10 pm. Of course, by Monday morning, he was getting better. All they did was give him some fluid. We thought he might go home on Tuesday sometime but on Wednesday morning, his ammonia spiked again. I think it was what he ate Tuesday night. He didn't seem disoriented at all, maybe a little lethargic but he ended up spending more time in the hospital because of it. My parents had already planned to come visit and they arrived on Wednesday. It was great to have them here, even if Tom was in the hospital for most of their visit. My dad did some painting for us which was a huge help! Once Tom got home, we spent another weekend being busy. I finally unpacked the last box and hung some pictures and stuff. We also spent some quality time watching football too! Tom continues to try out new recipes in the new kitchen.
Hopefully his physical therapy will start up again this week. He has another appointment in Birmingham next week. I pray they will feel he is now strong enough. I'm sure his numbers won't be very high so we'll see what they say. Tom is on a new antibiotic that is absorbable - maybe this will help with the ammonia level. That's what his gastroenterologist is hoping. He's also been taking extra ammonia medicine. It's no fun but if it keeps him out of the hospital . . .
We continue to take things one day at a time. It's hard not to look to the future - we certainly cannot plan anything, which is disappointing. Tom could really use a vacation. I just pray he can continue to get stronger.
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