by After our failed attempt at extubation we knew our next step coming was going to be a tracheotomy. Despite knowing it was coming, I definitely took that news harder than I expected. Mostly for selfish reasons – like wanting to be able to hear him cry or make noises like other babies. I talked to a few other moms of babies with tracheotomies, some who had them short term and some who have them long term, and I’m feeling a little better, though still overwhelmed at the amount of home care it will require if he hasn’t outgrown it by the time we are discharged. A small hurdle to cross though if it’s what it takes to get our baby healthy and ready to come home.
There is a lengthy home care training that comes along with a tracheotomy. This pretty much seals that we will not be coming home between AJs first and second surgeries, which means another 4 months or so out here in PA. We expected to be held out here through at least February, so this doesn’t come as too much of a surprise. Also, given that the riskiest time for babies undergoing the staged procedure he is having is the period between the first and second surgery, it’s a little reassuring to have him here. There’s always a chance that the recovery and training could move faster than expected and we could still come home though, so as usual, nothing is set in stone!
What is set in stone is that he will be having his tracheotomy on Friday. The ENT will be stopping by to talk to me about it tomorrow morning, but what we do know is that it’s a relatively quick procedure, and he will remain pretty heavily medicated for a week or so until it’s time for the first trach change so that the site can heal. After that he will be able to come off sedation and should be able to move more freely than he can now.
When they do his tracheotomy they are also going to go ahead and put in a gtube – basically a port that allows us to give his feedings to his stomach without going down his nose. It makes sense since he’s going to have a hard time feeding with the trach and its better than having the tube down his throat for that extended time as well.
It is yet another incision and procedure though. Poor guy has been through a lot and definitely will have the scars to prove it! I cheered myself up looking on etsy at gtube and trach patches and covers. Guaranteed he will have some of those in his life!! He may not be able to wear all of the cute clothes we have for him, but he will still be stylin’!
What I look forward to the most though? Kissing his cheeks without all the tape and tubes. ❤️
We were able to find reasonable last minute flights for Aaron, so he will be able to be here for snuggles before surgery and moral support after. Just a quick trip, but undoubtedly much needed.
There is still a very long road ahead for AJ, we could use all the prayers we can get for his procedure on Friday. Although both procedures are relatively routine for the docs here, AJ has a tendency to try to throw us all for a loop. Here’s to hoping he will be on his best behavior!!!
