Pierce has been much more stable today, although he is definitely having a lot more spells (bradys and apneas) than normal. Currently he's on 2 liters at about 30% of o2. Still not where he was at before all of the changes were made, but definitely a tad bit better. Right now the theory is (at least my theory and a few of the nurses/doctors) is that all of the changes at once really through lil' man for a loop. Of course the concern would be that Pierce is not tolerating being off the steroids, but because we have SO many other things to blame, and because he was on such a small dose (it was almost ridiculous how small his dosage was), I really don't feel that the steroids are solely to blame. So now the waiting begins. They won't restart any of his meds unless they absolutely have to and since today seemed better than yesterday, they want to give Pierce time to adjust. The neurosurgeon's PA did suggest tapping the VAD today in an attempt to rule out that there was any pressure build-up in the brain that could be causing this. I definitely think that was unnecessary, but at least we know for certain that that is not the problem. Please pray for patience as we wait. For wisdom for the doctors. And for healing and rest for Pierce. Pray that his tiny (Remember, in any normal situation a 5lb baby would still be considered tiny. We just have a skewed perspective now) body would adjust to the changes without requiring any further medications. The plan now is to wait and see how Pierce does without these medicines. They're checking his hemoglobin in the AM to rule out anemia-related episodes. And if he continues having these spells, they'll put him back on the caffeine first as it's the most benign of the drugs. If that still doesn't work, we are looking at inhaled steroids, which are a little less invasive and definitely carry lesser risks. Last ditch effort- Pierce will have to go back on steroids. But he would have to get much worse for us to get to that point. Please pray that Pierce grows stronger with each day and that he is able to come down on his oxygen soon.
It's hard on days like today-those where you feel like you're making NO progress and you're so far from bringing your baby home- to be joyful. But today, on the drive home, I praised God for getting us to this point. I was immediately reminded that for about the first 6 weeks of Pierce's life, each setback was a potential life/death situation. In fact, today Pierce's doctor reminded me that "he simply is not supposed to be here" according to medical standards. And I smiled, because I know, he is supposed to be here. There's a reason (or many!) that God chose to save Pierce time and time again. God is the One who ordained everything that has led us to this point and He is the one who will heal him and bring him home to us soon. Trusting in that tonight in the midst of our discouragement.