So, it's 2 a.m. and we just walked into PICU to find 4 people at his bedside- always makes me a little nervous that something is really wrong. He keeps setting off his ecmo pump- because he keeps waking up from the morphine and versed sedation and moving around too much! Leave it to the anesthetist's kid to be hard to keep down so to speak. He is now on double the amount of sedation that he was on during day shift! I kept telling them that during my NST's while I was pregnant, he was always the most active baby they had seen for the day!
Good news we should be completely off the dopamine by morning and they will probably leave him on a small amount of epinephrine for his coarctation repair. His lungs are responding pretty well to the surfactant they gave him yesterday- allowing his lungs to open up more and ventilate better! He is on 40% oxygen and they are starting to wean down his ventilator settings to get him closer to being on a conventional ventilator!
His ng tube ( goes into his stomach to make sure his stomach is not filled with air so that his lungs will have more room to expand) is not in his stomach and they are not sure what to do because he is on higher doses of heparin to help with his clot which could make adjusting the ng tube very bloody! We don't want that! We'll see what they say about it in rounds. They are thinking of doing the coarctation repair before the cdh repair as he will need ecmo for the recovery period. We have heard from one other cdh family who also had a coarctation diagnosis- this was very encouraging to us! If anyone else out there has a child that was diagnosed with both cdh and coarctation and had a positive outcome- please let us know all the details about it! At Duke, they have not seen a baby with both of these diagnosis at the same time before and are trying to figure out the best order to repair things.
I should be discharged from the hospital in the morning- it doesn't seem right or fair to have to go home without my baby- but I am thanking God that he is still alive and doing better than expected at this point! I can't thank you enough for all the support and prayers! While I have not had time to respond often, I am reading every comment and they are making us feel so encouraged!