Our sweet boy is quite a fighter! To look at him, you'd never know he was at death's door twice in the past two weeks. God remains faithful & with each day, we see more of our strong-willed boy's personality come out. :) He has come so far, but still has quite a distance to go.
Medically speaking, we still aren't quite sure what caused to get so sick & then to recover. Our own little enigma. In many ways, it feels like Isaac is picking up where he left off before getting sick two weeks ago. His heart continues to function well & his oxygen saturations have been in the ideal ranges. Our focus has returned to his respiratory & metabolic systems. We're still uncertain of how much Isaac's diaphragm eventration will affect his ability to breathe off the ventilator. The medical team is eager to get the ET tube out of Isaac, whether by extubation or a tracheostomy. He will either require surgery for his diaphragm or to place a trach. The issue of hyperinsulinism has been brought to the table again in trying to determine cause for the flux in glucose & lactate levels. (For the first time in many days, Isaac's lactate was in normal range on Monday! What a blessing to see that "1.7" on the blood gas report. Since then, his lactate has increased up to 4.2 yesterday & then back down to 3.4 This morning, the lactate was at 3.6, so he continues to keep us guessing. This may have resulted from efforts in adjusting vent levels or from starting to feed him breastmilk again through the ND tube.) The muscle biopsy performed several weeks ago revealed pockets of glucose being stored in the muscle tissue, which lends itself to a metabolic disorder - relating to how Isaac's body processes energy. He will have a round of octreotide scans done over the next few days to observe his pancreas & search for an insulin-sucreting mass.
So in short, Isaac is doing much better than a week ago, but still has a long road ahead. The areas of focus at this time are:
- his lactate levels: we need to determine the cause in their continued flux & stabilize the issue.
- his glucose levels: determine source for the hyperinsulinism & whether Isaac has a metabolic disorder. We need a successful round of octreotide scans for this.
- extubation: either successfully get Isaac off the vent & breathing on his own, or undergo a tracheostomy to aid in ventilation. Either way, the ET tube needs to be removed soon.
We're so grateful for all God has brought our boy through & for all He has in store for us in the days ahead. Though we don't know what each day will bring, we're deeply grateful for everyone we have with our sweet boy. Thank you all for your steadfast prayers. Let's keep bringing Isaac before the Lord & watch how He will answer!