Worried and waiting

We had repeat labs Monday morning and it was quite an emotional day for me. Again, lab day stinks simply from having to get my baby poked, but I completely overanalyzed and worried myself sick...hopefully unecessarily. Liver labs were acutally better, not ideal but lower. This means we won't be having a biopsy this time. Good news, right?! Well, I'm still worried about why his numbers are going up and down, and the doctors admitted they don't really know. They have mentioned the possibility of other issues, some worse than rejection, but I'm not sure how seriously they are concerned. This is where my imagination has run wild. We have not been told to be concerned, but we are waiting to hear back on a few extra labs they took.

Whatever is at play, whatever he does or does not have, is already what it is. The Lord knows what is in store for our family and I have to trust that...so easy to say, not so easy to do. Give it up to to the Lord. I just feel so disappointed that there are other things to worry about. I do find hope in the fact our last biopsy was clean. I have to celebrate our blessings and happy times rather than ruin them with worry about the untold future.

That said, I took Amelia for her 3 year check up today and it nearly hurt my feelings to remember how easy it can be with a completely healthy child. Thank God for her health.

Thatcher has an ultrasound scheduled for Friday to make sure there are no vascular issues. This is not a painful procedure, but it is difficult with a squirmy 17 month old. As far as I know, if his ultrasound is clear we may not have labs again for a month. Again, we are still waiting to hear back on some other labs so I'm not sure if that will change anything. In the meantime, we continue to pray and work on accepting the cards we have been dealt.

Dreary

The weather certainly reflects my mood - dreary. We had labs yesterday. I hate lab day. We had not been to Vanderbilt in over a month, since 12/1. I think that's the longest Thatcher has ever gone without being inside a doctor's office! I should feel nothing but grateful, but for some reason, I think it made it even more annoying, nerve wracking, dreaded.

Labs went smoothly then we come home to check the computer every 15 minutes to see if the results had been posted. By the time they are finally up, about 9:30, my heart is nearly pounding with anticipation. Unfortunately, all 3 liver labs were elevated. Ugh!! A punch in the gut. He appears to be doing so well, but I guess we never know. I spoke with the doctor that afternoon and the fact that they are concerned makes me very concerned. We have repeat labs Monday, if they are not improved then we'll have another biopsy. They do not think this is a medicine issue.

Shame on me for letting myself get too relaxed! We knew that transplant was not a 1 stop fix and that it requires constant monitoring and adjusting at first. I have to remind myself we are not even through the first year. It is the fear of the unknown that scares me most right now. Typically, rejection does not follow this pattern of up and down liver numbers and his last biopsy didn't show rejection, or other issues. This doesn't mean another biopsy wouldn't, but Thatcher has been following this pattern for a while now...what is causing this??

Ice cream for the birthday girl

I'm afraid rejection is not necessarily the worst case scenario. I'm scared the doctors are thinking it's some other, worse issue/disease causing the numbers to do this. However, I know better than to speculate and worry...it doesn't keep me from doing it though. I'm not sure I'll let my guard down again until they figure this out.

Yesterday just sucked! Thatcher's labs were not good then Amelia vomited last night. I have no idea if we should all expect to get sick now, but here we go.

In addition, we were referred to an allergist for Thatcher's reaction a couple of weeks ago. He will undergo allergy testing at the end of this month. I'm not sure they believe it was banana that caused the swelling. Maybe not. Apparently allergies are a common problems with kids on Prograf since it also inhibits the body from fighting off allergies in addition to infection and viruses. This makes sense, however, we had never been told this before so did not know to watch for it. Thatcher has been instructed to stay away from eggs and banana in the meantime until we figure out the cause. A subseqent reaction is expected to be worse than the first.

Amelia turned 3 this month!

We just want everything to be good, normal. I can deal with bumps in the road and we'll never give up of course. That said, bad labs and allergy problems have been disheartening. Even though I know better, I feel like we've been through so much that the worst is over. Should I not feel like this?? I guess it's part of our transplant journey. Thatcher is being watched and taken care of, we have stayed relatively well so far, and we are certainly doing all we can. As always, I pray for patience and faith in the Lord. We really do have many blessings and it's so important to count them. I know what I want, but I have to trust that God knows what we need.