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

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!

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!

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.