Rest finally came to little Ned last night around 10pm. It was an extremely long up hill battle yesterday trying to get his pain under control. The problem stemmed from the fact that his narcotic tolerance is extremely high due to living in a drug enduced state for months on end and that they can't start IV drips on the floor on children as young as Ned....that needs to be done in an intensive care unit. The NICU isn't supposed to bring children back into their unit after discharge....it's part of the way they control germs and infection and the PICU is always really slammed full with extremely sick children. Ned really isn't nearly sick enough to be in the PICU, but his pain was starting to cause him some real respiratory problems which I feared may send him back to the PICU for good cause?
Yesterday afternoon, he started to have some real signs of respiratory distress. He was needing more and more oxygen support and his O2 stats were slowly, but steadily decreasing. I called in my nurse and asked her to page surgery. Our surgeon was in the OR and the responding surgeon began trying different doages of the morphine and fentynal.....nothing. He continually kicked and screamed to the top of his lungs. This had gone on since 4:00 on Wednesday afternoon and he was so exhausted and in so much pain that he was too tired to breath and he was guarding his abdomen and only taking really shallow, really labored breaths. He looked terrible. Dr. Adamson got out of surgery and came by....agreed that Ned seemed to be in a bad way and suggested that we try him on one more medication (a muscle relaxer, not a narcotic) to see if that had any effect. If not, he said we would do whatever we needed to do to get him on some higher doses of pain meds. Once we started the muscle relaxer, Ned we completely to sleep for about 10 minutes, immediately woke up screaming. I paged the on-call surgery resident twice, when he didn't come immediately, my nurse paged Dr. Adamson at home. He called down to the PICU and the attending fellow said she would handle Ned's pain management without moving him to the unit.....yeah!!!!
When Bridget walked in our room last night, I have never been so thankful to see a human-being in my life! I felt like, "Thank you Lord"...here was somebody who knew my son and understood his addiction and tolerance levels. I told Bridget that I was so thankful that somebody who believed in drugs was finally here! It took an unbelievable amount of drugs to get him to sleep. After she gave him his first round of ativan and fentynal, she came back to see how he was doing...Ned just looked at her like "what else do you have?". They finally put him back on a Fentynal drip and he went to sleep around 10pm. He has been out like a light ever since. I know the child has to be completely wiped out. He is back down to .2 on his oxygen where he had gotten back up to 1.5 liters. I feel sure he'll come back off completely once he comes out of this little comatose state he is currently in.
Thank you all for all your prayers, they were much needed and felt over the past two days. I think we're over the hump and should start working on the feedings soon and try to make our way back home in the next couple days!
I just got back from visiting Russel and April, Baby Seth's parents. Seth is still stable on ECMO. The surgery team is re-positioning his ECMO cannulas this morning as they had shifted just a bit. Please pray, pray, pray for him and his family. Please ask God to work a miraculous healing in his little body like only He can do.
Much love to you all!
Betsy, Travis, Jack & Ned