Day 88

I know I haven't posted in a while... I've been waiting for some good news- any news, actually- before I updated. Unfortunately, we don't have any new information, and he's getting a little bit worse each day. We've been trying everything we can think of to help his poor beaten stomach, but nothing has worked so far. He's been vomiting more than ever the past couple of days, and he spent most of yesterday and last night screaming and crying in pain. One of his meds is Zofran, which is what they give to chemo patients to help with nausea, and that's not even making a dent. We're adding a new drug today, an antibiotic which is supposed to help with motility. This will be the third of this type of med we're trying. I'm not terribly optimistic, as the other drugs we've tried haven't worked, but we keep hoping to find the magic answer. We changed his feeds to an elemental formula, just in case his body is having trouble digesting proteins, but that hasn't helped very much either. So basically, we're still in the same boat as we were before, but he's getting worse. Please continue to pray for answers... We desperately need them.

That's only one of his issues right now. We're still dealing with his respiratory problems as well. He had another echo done yesterday to check his heart function. We know that something is different because his lungs are wet and he's requiring more oxygen, but the echo didn't show any major changes in his function. It's great that it doesn't look worse, but it's not improving either. He still has a lot of regurge from his tricuspid valve (which acts as his mitral valve), and we're fairly certain that's what is still causing his pulmonary issues. However, there isn't an easy fix for that. We're going to try some new cardiac meds (which aren't really new, as he's been on them all before), and hope that we can find the right combination to hold him steady until transplant. We're still waiting on a heart. The waiting game is hard, but we knew it would be.

We ask that you continue praying for our sweet little man. He's brave, and he's tough, but he can still use a little extra strength in his corner.

(I'm editing this at 4:30pm to say that he's actually a little bit better this afternoon... He's not throwing up as much, and he seems to feel a little better- even with his new fever. Maybe one of his new meds is working? Or maybe it's all those prayers. :)