Updated: Nov 18, 2019
I am not sure that I can put into words yet on what happened last night so I may come back and edit this because I am still trying to process and half asleep. But I want to keep everyone updated.
Last night we were able to sweet baby Noah around 7 PM. Our room is located right next door to our sweet friend Evangelina who just received her new heart a couple of weeks ago. Her mom is the most amazing person I have ever met!
Noah looked really good, chest closed, and resting well. He was doing pretty well so B and I were planning on going to go back to the apartment to get some rest, as you can imagine the day was full of nerves and we were so exhausted but could see Noah was stable and needed the rest. My mom was going to stay with Noah, but things quickly took a turn.
His chest tube was not slowing down on the blood output and was actually continuing to increase. They gave him so many bags of blood, his blood pressures were dropping rapidly and saturations were in the 30s and continuing to drop.. There were so many people in the room working on Noah, the alarms sounding. My mom, B and I just sat on the bed and prayed... feeling totally helpless.
The surgery went well and I knew these next couple days would be rough but nothing preps you for this kind of stuff.
At around 9:30 PM, the attending told us that if the bleeding does not stop within the hour then Noah will need to go back into the OR for Emergency Surgery. They did an X-ray and Ultrasound bedside and could see there was a lot of fluid building around the heart.
About 30 minutes later (10 PM) Noah's numbers started dropping rapidly so they called our surgeon back in and Noah was off to the OR. They had to do chest compression on him when they got back there, he wasn’t doing well.
He went back on the bypass machine, opened his chest back up, and determined that his chest wall was bleeding and had hemoragged- this caused a lot of pressure on the lungs and damaged his lung which was causing him to desaturate so quickly...
Some of our favorite anesthesiologists and doctors came in and could tell that we were panicked. One of them looked me in the eyes and said, "Noah is going to be okay". At that moment, it was all I needed to hear, and God knew that.
We tried to get some rest while waiting for Noah to get out. About 2 hours later, the surgeon came to talk to us and let us know the details of what they found (as I mentioned above). Noah's chest would remain open until he felt comfortable closing, hopefully in the next one to two days.
When B and I first came to TCH we requested a specific surgeon, based on Noah's case, we didn't get that surgeon we requested but I honestly couldn't imagine anyone else taking care of Noah. I feel 150% confident with Adatchi taking care of Noah.
Dr. Adachi let us know that he was going to spend the rest of the night at the hospital, just in case Noah needed him again and he told us " We will make him better". And a wave of peace came over me; I know that they will do just that.
We got to see Noah again around 1:30 AM. Chest open and looking a little paler but what a fighter he is. It hurts to see your baby like that, but they are still your baby and somehow you just find the strength to get through these days.
He is stable now and his lung is looking a little better, but this is definitely a set back to his recovery. Today we are hoping that Noah's chest will be closed.
People from around the world have flooded us with prayers, love, and courage... God heard you all and he performed a miracle last night <3 I am trying to get back to everyone but please do not get offended if it takes me a couple of days.
These next few days and weeks will be tough but we have so much faith that Noah's going to rock it. Thank you for believing in him as much as we do.
November 15th, 9:35 AM UPDATE:
Noah's chest was closed yesterday!
We are really happy about this as Noah was beginning to wake up despite giving him numerous PRNs of Fentanyl and Versed to calm him and keep him comfortable. While his chest is open, he has to be kept in a "paralyzed" state as it can be really dangerous for him to wake up and get upset/move.
The chest closure was successful and Noah's stats are looking good right now. This morning we are focusing on extubating Noah. With the new Glenn physiology, it typically does better after extubation so they try to do this fairly early in the recovery. We are praying that Noah's lungs have recovered from the damage enough to handle breathing on his own.
I can't wait to see Noah smiling and playing again, I miss him.
We are hoping to know within the next week or two if Noah can be weaned off the Milrinone. This will be a huge factor in determining if the next step for him is a transplant or if we can continue with the Hypoplastic 3 stage surgical route and go HOME finally. We are hopeful.
Noah is feeling the love that everyone is showering our family with <3
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