Well, we did end up coming home yesterday evening, and though I am thrilled to be back in my own environment, it has been a rough 20 hours. Ethan has been extremely fussy and he doesn't have much of an appetite. From the day he was born, he has never been a really fussy baby. He generally cries when he's hungry, has trapped gas, or fighting sleep. Generally easy to console one way or another. That is not the case as of late which indicates to me that something is wrong. But, it's trying to pinpoint WHAT is wrong that's causing my headache right now. I expect he's in some sort of pain, though there are no visible signs of problems in his mouth or on his bottom. The side effects from chemo can be delayed a couple of days and since the chemo stopped around 3:00 yesterday afternoon, we may be hitting the brink of some side effects surfacing. The tricky thing is that the potential side effects from one of the chemo meds he got this time is nerve pain and jaw pain. How in the world do you know if your baby is experiencing that kind of pain? Exactly.... it's a guessing game. I've also been wondering if he's teething. He keeps chewing on his fingers and bites down on teething rings, but with all that's going on with him, it's too hard to tell one way or another. The only thing that seems to calm him for a short while is Tylenol. However, I don't really want to have to give him Tylenol around the clock every 4 hours because that will mask a fever that we need to be watching for any time we are at home from the hospital as that is really our only warning sign that an infection has set in regarding his cancer treatments.
So... needless to say, things are hard for us right now. Please be in prayer that Ethan will start to eat again and that we can better understand why he screams and cries so often. Pray that if the pain is a result of a chemo side effect that it will disappear quickly and if he's growing a tooth, that it will just pop right out!
I talked to the Boston Children's contact this morning. No news yet on the donor situation, but they have been in contact with several people to have further testing conducted. He thinks we should have more information next Friday.
I'd write more, but I'm thoroughly exhausted... Happy to be home, but in desperate need of the Lord's assistance right now with Ethan.