10 minutes after I hit “post” on my last entry things made a drastic change. I feel like I jinxed us with my “wait until he gets better” mentality because very quickly things got worse.
Today we had a new day nurse. She and I clicked immediately. The other child she was watching over went home early so she had a lot of time to spend with Finn and I. It felt like we were kindred spirits. We talked about Finn and the kind of interactions he typically has, his personality and more. I mentioned for the past few days he’s been fighting the rhinovirus so I felt like he was a different baby. I told her that I brought in a skinny but happy baby but now I was holding a chubby but crabby and listless one. It felt good to chat and be social. Little did I know that I was inadvertently dropping breadcrumbs for her and she was putting together a pretty accurate story of what was happening with our son’s health.
I left the room for the first time today to grab lunch, post the update below (Helpless) and just take a short break. I was probably gone for 30 minutes. Jeff met me at the welcome desk so we could do genetic counseling and get blood drawn to send in the whole exome sequencing (WES) lab. While walking back to the room I saw our nurse, Laura, and the NP quickly moving down the hall toward our room. When we arrived they let us know that Finn was being moved rooms, put on a CPAP (non-invasive ventilation), adding an IV, NJ feeding tube and increasing his support all around. Moving rooms isn’t arbitrary here. it is a good thing or a bad thing. The further away you are from the doctor’s offices and nurses station the more stable you are. There are 20 rooms. When we were admitted we were put in room 10. On Friday we moved to room 19. Today we were moved to room 1. 

While the doctors and nurses tended to and moved Finn we spent an hour with the genetic counselor. Finding out about the implications of investigating all of our genes and the potential anomalies. The entanglement of knowing that you are more likely to get cancer or some other disease is scary. Do I want to know what I am at risk of? After signing off on our respective wishes we went to find Finn’s new room.
I broke down when we entered his new room. He had so many more machines, helping him. IVs dripping, bigger tubes to breathe. It just felt so much more invasive and serious. All this for a cold? Because of the size of his heart his lungs don’t have any space and they have an enormous job to do. He is really struggling to breathe and we needed to take that pressure off him. On top of that he needs multiple medications to slow his heart down and pump blood properly. His heart rate was just too high, even resting. The IV fluids were now replacing his NG tube feedings while we got ready for a NJ tube placement (to bypass his stomach in effort to combat his intense reflux). My poor baby. He is so little and he needs so much help. This is all so overwhelming.

Once we got settled in our new room and updated on all the new hardware and medications we had to go get labs drawn for genetics. Asher came down to the hospital and was excited to help his baby brother get better. I told him that they were going to give him an owie, but that he is helping us to get Finn to come home. He was completely on board. I volunteered to go first and then it was Jeff’s turn. For some unknown reason Jeff has a vasovagal reaction to getting his blood drawn. This is the physical response from your nervous system that can be triggered by seeing the needle, seeing your own blood, or just feeling anxious about the whole thing. Asher, on the other hand, barely squealed or cried. I am so proud of that guy. He was happy to do it on behalf of his brother. What a kid. 

We had dinner together and then the big boys went home. I’ve spent most of the rest of the night crying on and off in between visits from the physician, nurses and other team members. They have been preparing me for the potential outcomes of the night. There is a chance that if his breathing doesn’t get better they will need to intubate him. This requires a mild sedation and would mean that I won’t even be able to hold my baby. In true form I’ve continued to ask a million questions. Everyone is so accommodating and I truly believe they have my son’s best interest in mind. This will be our home for the next few weeks, undoubtably. 

1.) Rest
2.) Recover from rhinovirus
3.) Eat and gain weight
4.) Go home
Maybe if we look at it that simply it will make it easier. When I read that list it doesn’t sound too complicated. Throw in an extra large heart and you get a pretty complex case.
We won’t know results from our WES for 7-10 days but maybe that will unlock some more information and help us to treat our baby. In the meantime we rest and try not to get worse (jinx?). Last time I said that things did a nose dive.
April 3, 2017


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