Day 12 (Tuesday August 9th)

Greg and I arrived early to the hospital this morning. We were told that Aiden would most likely have his ECHO( a sonogram of the heart ). They would also then start the ECMO trial today. At around 11am, Aiden received his ECHO and they started to wean him off ECMO at 11:31am. He lasted for an hour and a half and they decided to end his trial because his pulmonary hypertension (PPHN) was bad. They would like to up the dosage on his Flolan (keeps PPHN down). Aiden receives Flolan every twelve hours and it takes a while to up the dosage. They will trial again in a couple of day but no word yet on a date. Originally before we started the trial we met with the Pediatric Surgeon who was working this week, Dr. Ehrlich. He stated that he would like to do the repair surgery on ECMO. They are benefits and risks to do the repair surgery on ECMO. He did not want to take Aiden off ECMO during surgery even if he could last because he wants Aiden to be well supported and be able to rest after surgery. So we knew whether he did good or bad during the ECMO trial that surgery would most likely happen this week or next. The surgeon would like Aiden to be ready to come off ECMO (but still be on the machine itself) before they do the surgery because this will give him a better chance of healing. To put  him back on ECMO after the repair surgery would be a very bad thing. He has been bleeding some out of his colostomy procedure because when babies are on ECMO they bleed because they are on Heparin which thins the blood. When there is an opening on the body the blood finds some place to go and this happens to be at the colostomy site.  The techs did an x-ray before I left the hospital today and no official word came back about the x-ray. One of the Peds Surgeons stopped by tonight and was not concerned with the bleeding at the colostomy site because it has put out some clots which means that the bleeding has slowed down tremendously.   The surgeons stated that Aiden didn't trial well today because he is too "dry." He is peeing too much making his insides dry. Peeing is good for these babies because they are so puffy from all the meds but he is a "champ" when it comes to peeing. At this time he doesn't have enough support (liquids) to keep the medicine inside his litttle body. The Pediatric Cardiology team has now become involved with Aiden to help figure out his pulmonary hypertension (PPHN) issues. The more people involved the better (I hope). 
Have I told you how much I hate pulmonary hypertension? This seems to be Aiden's biggest issues amongst many others that is truly keeping him from coming off ECMO and getting his repair completed. We are actually in a study now to see why pulmonary hypertension affects CDH babies so much. I hope they come closer to an answer to help more babies like Aiden. Keep the prayers coming for Aiden.

Please keep the Hall family in your thoughts and prayers tonight. Their daughter has lost their battle with CDH. The Hall family has been so kind and helpful to our family. I am heartbroken for them........