Aiden’s Update – March 29, 2016

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As I write this, Aiden’s doctors are determining if he we will be moved to Salt Lake City, UT to the Primary’s Children Hospital. What often happens with CDH babies is that they may appear to be fine at first, but things can change as quick as a heart beat. My first time seeing Aiden after holding him in the delivery room was about 6pm last night in NICU. At that time, he appeared to be stable and they were continuously working to manage his stats. Although I could not hold him, we were able to hold his hand and touch him. By this time, he was quite sedated and already on the oscillatory ventilator. Around 8:30pm I returned for a visit and walked in to more machines, what felt like organized chaos and nurses working nonstop.

Aiden after Deliver - Critical Care

Before getting a run down from the nurses, I had the opportunity to speak with the NICU physician. He explained that when Aiden came in, he was about a 2 on a scale from 1-10, however that changed and he was now around a 7. He was also kind enough to sit down with me and go over Aiden’s x-ray, which showed in detail the issues he is now having with his lungs and the extent of his organs in the chest region. Aiden’s small intestine, large intestine, part of his stomach and colon are all herniated on the right side of his chest. This has resulted in the heart being pushed to the right and the pressure and underdevelopment of his lungs. He has lung tissue on the right, but the left side appears to be almost nonexistent. The heart saturation was an obvious issue of concern and they wanted to see it more balanced, but his blood pressure was the big concern. Aiden’s blood pressure dropped considerably, was not pumping properly to his lungs and they were working to bring it back up. By this time he was on multiple drips, on the ventilator, Nitric Oxide for his lungs and three medications to keep him sedated, keep him in a paralyzed state (to help ease any anxiety and keep him from resisting treatment) and for pain. Everything triggered a reaction, which resulted in them placing him on minimum interaction, eyes covered, ears covered, with the exception of of his treatment of course. From 8:30 to 11pm I watched them work tirelessly to improve his blood pressure and keep him stable.

I returned around 5am this morning, his blood pressure was better and they were continuing to administer Epinephrine & Dopamine to keep it stable. By this time, the oxygen saturation became a major concern. Initially the left and right side were consistent with one another, but the left started to dropped. The right stayed between 95-99, while the left dropped to 68-77, when I checked at 8:30 this morning it was as low as 40. They called in a respiratory therapist to help with adjusting treatment, in hopes that would increase the oxygen saturation. The adjustment did not help, so they requested medication to assist. The first one I can not quite remember the name, but the intention was to administer it first, if it did not help, to start with Flolan, which has to be requested and approved by the hospital. The issue with Aiden’s lungs puts us in our current situation, if this medication does not work, they will have to determine if he will be sent to Salt Lake City for treatment with ECMO ((Extracorporeal Membrane Oxygenation- a procedure that uses a machine to take over the work of the lungs and sometimes the heart).

(I have to stop this right here, Aiden’s doctor just called us down to NICU at 1pm).

She has already called the team at Primary Children’s Hospital in Utah and they are headed here. Aiden will be airlifted today, the team should arrive within the next hour or so. Aiden’s doctor made her decision after continuing to treat him over the course of this morning and afternoon. She said in Aiden’s case, if it were her child this would definitely be the best choice and she feels confident in his chances and survival by receiving the ECMO treatment.

AidenSunrise2

As you can imagine we have a lot to do right now with the other kiddos and making arrangements to travel to Utah and so on. This is tough and I would say that we have had our fair share of tears today. Just pray…..pray that Aiden continues to hold on and fight, that he makes it to Utah safely and responds to the team and treatment there. I love and appreciate each and every one of you for the continued prayers and encouragement. Blessings~Kia

‪#‎AidenStrong‬ ‪#‎CDHawareness‬

To READ Aiden’s Story – Love, Hope and Faith for Aiden

On FaceBook: https://www.facebook.com/LoveHopeFaith4Aiden/

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