Charlie has been having good days and nights. He is on a scheduled wean to be off of the final two pain meds by the beginning of June if all stays on course. He is handling the weaning great. I think he is ready to have his baby energy and abilities back. He has been doing lots of good strong kicking, bringing hands and feet to midline, hands to mouth, playing with and grabbing toys, and even trying to roll over…with tubes, wires and all! He is a strong little boy. With every wean we see more and more of what he is capable of, praise God! We have 2 specific prayer requests for our prayer army out there:
1). CRITICAL: That his fistula output would stop or at least decrease significantly and that his bowels would begin digesting again. If the fistula output would stop, it would likely heal and warrant no need for further surgeries.
2) That his pulmonary hypertension would heal and not require meds (that could keep us here at least until we could give it to him orally). Today’s echocardiogram revealed improvement/healing from last week. This is a huge encouragement and praise!