7 More Days

Only 7 more days until transplant. Thank goodness. This time next week I'll have less of a liver and Thatcher will have more of one! I say thank goodness because we have had a very rough week ending up at Vanderbilt Children's. Luckily we are home now and plan to stay here for the remainder of the week and get ready for our journey to Pittsburgh.

I began a blog post at the end of last week about how Thatcher had been growing increasingly uncomfortable and not sleeping well. About last Monday he began tossing and turning in his sleep and would not stay down. He was just so uncomfortable. We had clinic last friday and he lost 6 ounces and finally has some fluid on his belly (ascites). His belly is noticeably distended now. They started him on a low dose of a diuretic for the ascites and are giving him everything they can for itching. I'm sure he's itching, and he is getting his top two teeth to add to his discomfort. They can also get uncomfortable as their liver and spleens become enlarged and push on other organs...kind of like when you’re pregnant.

Anyway, I was going to share this information over the weekend, but could barely find the time between Thatcher not sleeping and needing to be held almost constantly. Finally Saturday night, something seemed to snap and we were up all night. We saw every hour on the clock instead of our usual 1 to 2 am. Thatcher was screaming and arching his back. He appeared in so much pain. He only slept out of sheer exhaustion from crying. I just held him through it so he would know I was there and count down the hours until he could have more medicine. This continued all day Sunday as well. While the screaming somewhat subsided, he whimpered and fussed constantly, sleeping for only about 30 minutes at a time. We could not get him to smile and his dark circles pointed to how tired he was. I could not imagine doing this until the 22nd and was devasted we had not chosen the 15th for transplant when it had been offered.

2am Monday morning, Thatcher felt very warm and his temperature was 100.6. His first fever since his diagnosis. Only 1 more week to go, hang in there Thatch! We have been instructed from the beginning to call if his fever ever reached 100.5 or above as this could be a sign of infection. At this point, I kind of thought we had been in the clear as far as fevers were concerned. I called first thing Monday and they wanted us to come in through the ER.

It had been Thanksgiving since our last inpatient visit...I had not missed it. We were admitted to run the gamut of testing and lab work. Thatcher got an IV to take blood and they catheterized him for his urine sample (poor guy!) By this point, however, his fever had gone down and he seemed to be gradually getting better. My biggest fear was postponing transplant since they will not operate if you are sick. We stayed over in a small holding room in the ER Monday night. After checking Thatcher for everything under the sun, no news was good news!! They found no reason to keep him and Thatcher left all smiles today! He slept better last night than he has in weeks. BJ suggested maybe he liked the hospital and had missed it...good thing I guess, since we're about to move into one.



For this reason, I’m tired but try to remind myself that when poor Thatcher is hurting I need to be there for him. Please pray for my strength to be there for him and Amelia. She really noticed all the attention Thatcher was getting while he did not feel well and has been pretty touchy lately. As surgery is approaching, I am becoming increasingly nervous and full of emotion. I’m very sad to be leaving Amelia for so long and have probably driven my relatives crazy with questions and instructions for her care while I’m gone. (Please be patient with me...apparently planning and overanalyzing is how I deal). I can’t parent from Pittsburgh, but I will try :).

We plan to leave for Pittsburgh Sunday. The caravan includes my parents, BJ’s mom, and our dear friends Ken & Erica. What a blessing! Please pray for safe travels for everyone. I report to UPMC Montefiore hospital on Monday the 21st at noon to sign papers and go over pre-op information with the doctors and nurses one more time. I will not be admitted until the next morning at 5am.

Thatcher will be admitted to Children’s Hospital of Pittsburgh on Monday the 21st at 2 eastern. I’m not sure how long my pre-op stuff takes, but I plan to be with Thatcher all I can before the surgery. He will get preliminary blood work and deal with other pre-op things until surgery. We’ll pack lots of toys for him to play with!

Here is a map from my hospital (A) to Thatcher’s hospital (B) – 2.9 miles:


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I can’t imagine how hard it is going to be to leave him before going to my surgery as I will be leaving him for several days during one of the hardest times of his and BJ’s life. He cannot eat after midnight but I hope he can sleep through most of it. Having to soothe a hungry baby who doesn’t understand why you can’t feed him is terrible! This was one of the worst parts of our stay at Vanderbilt during all of his testing. ***Dear nurses, is it really necessary to take his blood pressure at the risk of waking him and his growling tummy?!. I’ll assume that it is.

Lots to do before we leave, but not much else to do before surgery as far as testing is concerned, except try not to get sick (again)! Germ-X please!