Day 6

I am updating the blog on behalf of Greg and Leslie as the majority of their time is devoted to Aiden right now. The past few days have been a roller coaster to say the least. On Monday they discovered that Aiden has a slight bleed in his brain. At first the bleed was not of huge concern and can be a common complication while on ECMO due to the amount of Heparin (blood thinning agent) that is needed to keep the circuit from clotting, but none the less, something that needs to monitored carefully. Early Tuesday morning they discovered that he had a pneumothorax (hole) in his right lung. They inserted a chest tube to drain off the fluid and allow the lung to reinflate. The lung will reseal itself, but the chest tube will stay for awhile to continue to drain fluid. Despite lowering the heparin, the brain bleed had progressed and it was in Aiden's best interest to come off of ECMO before it progressed any further. They were hopeful that he was ready to hold his own on the conventional vent. Aiden did very well for the first several hours but by Wednesday morning, he was struggling once again. They moved him to the oscillator, a high frequency ventilator, and he continued to have issues with blood pressure and oxygen saturations. After meeting with the head neuro surgeon and pediatric surgeons, they came to some conclusions:
1. Aiden's case of CDH is worse than previously thought
2. His pulmonary hypertension is severe
3. He has a peripheral anus (basically meaning the colon does not extend to the outside of the body) this caused the meconium to push up onto the other organs. He does have a colostomy at this time until this repair can be made. No word yet on when this will take place.
4. The diaphragm repair is not an option at this time as he is not stable enough for surgery. Although the repair itself will place the organs in the correct place and let the lung expand, it will not necessarily help his current situation so it is more important that he is stable enough to handle surgery.
5. He has a level 2 bleed in his brain (with time they hope this will be reabsorbed with no lasting issues, time will tell)
Due to the severe pulmonary hypertension, Aiden coded for several minutes this afternoon. Dr's were able to stabilize him once again and the decision was made to put him back on ECMO. The cannulas hadn't been removed since yesterday, so he was hooked back up quickly. Since this afternoon, he has been stable on ECMO and the Dr's are hoping that the next few days he can rest. As long as the bleed remains stable and there are no further complications, they will attempt a trial again in a few days and will use medication to control the pulmonary hypertension. Greg and Leslie were encouraged to get some rest and sleep tonight after a very dramatic few days. The dr's have said he is a very unique but severe case, but they are hoping for a few quiet days and another trial off ECMO in the days to come.
Please keep Aiden, Greg and Leslie in your prayers. The last few days have been very touch and go as will the next 24 to 48 hours  as well....
Carrie