Day 17

On Tuesday, Aiden trialed for one hour and thirty minutes. He did well with some moderate PPHN. The Pediatric Surgeon, Dr. Ehrlich would like Aiden to trial one more time to make sure he is ultimately ready to come off ECMO. They are thinking that in the next 2-3 days that going to take Aiden off ECMO and do the repair surgery after a day or two of rest. Or in the next 2-3 days they will do the surgery on ECMO even if he is ready to come off ECMO because the surgery itself stresses out babies and he could ultimately need to go back on ECMO and this would be devastating.

On Wednesday, I was able to participate in some of Aiden's care. I have been taking his temperature every hour when I am in his room. I changed his diaper once. That was very hard and scary because there are lines everywhere and I didn't want to cause him pain or pull anything out. He used a pacifier Wednesday night and he totally loved it. Thanks Carrie for suggesting this. Carrie, who has become a close friend through this CDH journey, came to visit with Aiden and I on Wednesday. Carrie was in the same boat four years ago with her son, Noah. Carrie has been extremely helpful because she definitely knows the ropes. If I have a question or a concern I know I can call Carrie and she usually knows the answer or knows what to say. Thanks Carrie!

On Thursday 8/11, we were told that Aiden would again trial on Friday 8/12. During the trial he would be at 15 on Flolan and be put back on Nitric. If we found that his pulmonary hypertension (PPHN) was good then they would possibly cut away from the ECMO machine and do his repair surgery. If his PPHN was moderate they would possibly do the repair surgery on ECMO. Aiden's gases have been really good this week which is great. Aiden has been having trouble with keeping his blood pressure (BP) up when he is turned which happens every four hours or when someone touches him too much or it is too noisy in the room. CDH babies are sensitive. Aiden has been opening his eyes a lot in the AM. I now have this on video and will post in the future.

On Friday 8/12, I was able to brush his hair and put lotion on parts of his body. He enjoyed it for a little bit. The nurses and doctors are pleased with the breaths they are getting on both lungs at this time. Gases are still good. Trial lasted four hours today. At the very end of the trial Aiden started to drop his BP and was having trouble blowing off CO2. After giving his a bolus of Albumin (?), Aiden was where he needed to be. Aiden has been so good at peeing that he ultimately is causing his organs to become dry which in turn lowers his BP. He has trouble keeping fluids inside. We are now back to the drawing boards of figuring out how to keep him peeing but not as much as he is now. We are now going to trial again either Sunday or Monday after talking with the Peds Urologists about his peeing issues.

On Saturday 8/13, the Peds Urologists came by to figure out Aiden's peeing problem. I have heard that peeing too much is better than not peeing enough. I hope that is true. The Urologists found that Aiden has too much sodium in his body which is causing him to pee off so much. They will check their records and figure out a game plan on how to get this solved. They stated that Aiden's sodium intake is high but it is not dangerous. Thank God! They are now trying to figure out if it is some of the medicines he is getting that is putting his sodium intake at a high level or if it is something else. Urologists stated that the kidneys look good and that they are not worried about their shape or function. Thank God again! Last night when I went back to check on Aiden before bed the Urologists had ordered a saline based solution with less sodium to see if this will help out our little guy.

On Sunday 8/14, I called the nurse in the morning as usual to check on my baby. She stated that he is still peeing a lot but that the saline solution had started to work so we are all hoping that with time this will be his solution. They are also testing some of his stool because he has been pooping more than usual the last two days and they want to take precautions to make sure there is not an infection. Pray there is no infection in his little boy. I will update more later. Thanks for all your support and prayers.