June 21, 2016
Let's Get This Ball Rolling
Mama bear had to come out full force this week.
We've had to push for the past few weeks to get things rolling along for Aiden. Everyone in the NICU has always agreed that he will need a trach. David and I have been on board and very anxious for this to happen. It's a light at the end of the tunnel, and more of a chance he'll get to come home. So the minute he was showing signs of being stable and on the ideal vent settings, we started asking what needed to be done to make it happen.
The moment we opened our mouth about it, it became a game to get viable information from anyone. Although there has been nothing but talk of a tracheostomy since his birth, everyone suddenly didn't know what to do about it. David and I ended up feeling like we were babysitting.
We knew what doctor we wanted to perform the surgery. There is a specific one that has worked on the small handful of other children with Aiden's same diagnosis in Utah. Any surgery, and especially general anesthesia, is very tricky on a person with any type of skeletal dysplasia. There are some pretty scary precautions. A wiff too much of anesthesia could send a little person into cardiac arrest. The collagen gene mutation causes their airways to be soft, and therefore very easy to puncture. So finding an ENT, General Surgeon, and Anesthesiologist with experience on operating on children with dwarfism is worth its weight in gold. And naturally, we refuse anyone but these doctors to come near our child.
I can't tell you how many times and how many people I told this to. But each time I gave them that list of doctors, the NP would go consult with another doctor. And each doctor didn't want to do the trach because he wasn't comfortable operating on a child like Aiden.
Three times this happened with a specific NP. On the third time the NP came back to me, said she had talked to an ENT that was on vacation so he said he wouldn't do it anytime soon. And the NP wasn't sure when he would be back from vacation, so we would have to discuss the trach at another time. I was flabbergasted and dumbfounded. The logic escapes my mind - even if I didn't request a specific doctor, why would you come back and tell me that?
I'm nice enough that I felt bad afterwards, but I got real snarky with that NP. I questioned her as to why the doctor I requested wasn't consulted yet. And said I refused to have anyone but those doctors operate on my child, and I wanted her to go talk to those doctors right now and then get back to me.
Finally they talked to who I wanted. And guess what? This doctor said a trach wouldn't be an issue and he could get us in in a few days. And now we are officially on the schedule for a trach and g-tube this Thursday. Bam.
I've had many family members and friends question if this is really the right decision for him. I know they mean well, but when it comes down to it, why does it matter? He is going to need long term respiratory support - and that's OK! It's not permanent, and there are much worse things to go through. And the best part is he can be a normal baby (within his realm of normal, of course). Yes it's not an ideal situation for any child. But if this means he can live, then I'll take it. And one day he'll have an awesome scar he can show off to his friends.
Also, ending note, this means I will get to see my baby without tape on his face for the first time. I can't wait to see and kiss that upper lip all over.