Oct 20

We survived an early morning dialysis and an afternoon appointment! Well, Benson almost did. Jared took him to a friend's house this morning but he wasn't very happy about it. They tried to keep him happy and entertained...and it lasted for a little while. But he ended up coming to the hospital for the last hour of dialysis and going to the Dr. appointment with us. Claire was thrilled to see him, as usual. The best part about that for HIM was riding the shuttle bus from the dialysis hospital to the appointment downtown. The highlight of his day for sure!

So here's the word. The hematologist said that they usually do ultrasounds once a month. And since her leg appears to be doing better since the last ultrasound they did a week ago, they are going to hold off on doing another ultrasound for 3 weeks. I was kind of hoping we could do another one just for the comfort of my own heart--to see for sure that things were getting better; but the doctor feels comfortable with how things are going. If Claire's wasn't walking on it and was still in pain with a simple touch, they would check it out to see what was going on. But since she is walking again and feeling well, they are taking that as a sign that things are improving! So we'll wait for another 3 weeks and see where she's at.

The other thing we discussed were the shots of lovenox verses giving her an oral medicine called coumadin. Obviously for us giving her an oral medicine (that we would push through her G-tube anyway) would be a million times easier than poking her twice a day. However, the doctor has never given coumadin to a child as young as Claire. It would be more difficult to manage and would require more monitoring and blood tests to make sure the level stayed within the limits. The risk with either medicine is bleeding. So again, making sure Claire doesn't have any major falls/trauma to her body is very important. After talking with our main kidney doctor about both medicines, they decided to keep her on the lovenox (heparin) shots. The other thing she confirmed was the she does want to keep her on these shots for 3 months. I can only imagine how Claire's little thighs are going to look after 3 months of twice-daily shots! I feel so bad. Good thing Claire doesn't hold a grudge. At least we can feel better knowing the shots are working and the clot isn't getting worse. The pain is bringing healing.

Interesting how that works sometimes. Benson was wondering why we have to keep giving her shots when they hurt Claire so bad. We told him she has to have them to help her leg get better. But that's not helping her leg get better...it's hurting her leg worse, he said. Seems counter-intuitive, doesn't it. I suppose it's a lesson not only on blood clots, but on life sometimes too. Sometimes we have to go through pain in order to experience the sweet joy of healing and restored health.

Often these past three weeks I have forgotten all about the fact that Claire is still on the waiting list to receive her kidney and liver transplants. The call could still come any hour. They will have to reverse the blood thinning effects of the heparin shots before a transplant can occur. If the call for transplant comes between now and the next three months, they will reverse her thinned blood within 12 hours, proceed with transplant, and still put her back on the shots after transplant until the 3 month time frame is up. They're worried that if you don't treat the clot for a minimum of 3 months, the clot could reform.

And that's where we're at for today. Not a lot different. A little more understanding. And taking a comfort in the fact that time flies...and 3 months of shots will seem like nothing in the big scheme of things! (as long as my husband doesn't go out of town!)