10/07
Liver labs are in and I don't like them:
ALT 195
AST 140
GGT 50
This is even higher than they have been since they started getting high. I really don't want to wait a month for a biopsy, I'll see what the doc has to say.
The neurologist said the infarct looks like it came from a stroke. It is old and should cause her no problems. They do want some blood work to make sure she doesn't have any kind of condition that would cause or make her prone to strokes. They are going to check ct scans she had previously to see if they can pinpoint when this happened. It may have always been there even in utero. I wonder if it could have been caused because my ob made me hold her in for a half hour.(not in the least bit kidding I timed it) because he was in surgery.
No reason for the seizures, so that is good. Brain looks good except for that infarct. Doc asked if we have seen a heart doc. Hmm. I really don't want to add another to the list.
Blood pressure still high so no chance in dropping those meds. We'll probably have to up them next week when we see nephrology.
Through all this, I look at her and she is just so beautiful. Always smiling and laughing. Makes me think, hasn't she been through enough. I think I am starting to spoil her. I Know these are all just small bumps but why do they have to happen at the same time. You know, when things are good, they are really, really good. But when the crap hits the fan...
10/4/04
We saw the transplant team this morning. They couldn't identify the rash on Erin's face but all docs agree it is viral. She has had it for 3 weeks. Tx suggests a dermatologist. Another specialist added to the list. It is red and around the mouth and nose area. Anyone know anything about this kinda rash?
So, even though Erin is on a low dose of prograf, tx thinks she picks up too much viral stuff. Since she is on a low dose(here comes the interesting part) they would like to take her off prograf altogether. That would mean no immunosuppression at all. WOW! I'm still digesting this. Of course that is a great goal. So we will wait til this set of labs come in and if her alt/ast are still off(have been for over a year) she will have a liver biopsy. If the biopsy does not show any rejection than she comes off prograf. This all happens in November after we come back from vacation. She had her blood pressure taken and it is still a little high so I guess there is no chance of starting to wean her off those meds when we go to see nephrology next week. All things in good time.
On the neurological front, Erin had her MRI last week and did just fine with the chloral hydrate. (Thank the Lord) Those results get read by the neuro on Wednesday. Pray this goes well. They found an infarct last spring on her brain that is unrelated to the seizures. I am preparing for them to tell me she has epilepsy. I hope not. But I won't be shocked. So pray that that visit goes well and that her liver labs come back fine.
When she realized they were taking blood she looked up at me and said "Mommy I don't want to get a boo boo" Oh, my heart just broke. What a truely remarkable kid she is. I just love her soooo much.
We went to the zoo afterwards because it is only a couple of minutes away and Erin loooves animals. We were having a good time until the poor thing fell off a chair and banged her head on the floor.
