The new vent trial didn't go so well. The issue was our DME company didn't show up with all the right pieces and parts for the new vent. Jack did fine initially, but his heart-rate went into the 160s and pretty much stayed there while on the new vent. There was clearly something wrong with the set-up, so the decision was made to put him back on his regular vent and try again next week when we have the correct set-up. You know, because I have nothing else better to do with my time but spend another day at the doctor's office. Grrrr! (Time is a precious commodity and I really, really hate wasting it!) The pulmonologist also changed Jack's mode of ventilation, which, in retrospect, was not a good idea because we should only change one variable at a time so if there is a problem, we only have one source to look to. We don't know how much of Jack's stress yesterday was attributable to the vent and how much was attributable to the change in mode of ventilation.
And, I just have to share something that really gets under my skin. After we got home, I called Jack's pulmonologist to talk to him about how Jack was doing and he says to me "you might want to check his trach to make sure he doesn't have a plug". Really? REALLY? I've only been doing this for thirteen years, I think I know when my child's trach is plugged and when it's not. Sheesh! (I really do like our pulmonologist, but this comment didn't earn him any points, that's for sure.)
In any event, next week is "Take 2" and I'm optimistic that it will be much better the next time around.
Here is a picture taken less than an hour into the vent change -- Jack was still happy at this point. My hand is on the new Trilogy vent.
After a long and stressful day at the doctor's office, we came home to this:
I don't think I mentioned that we had to return the dog we adopted around Christmas to the shelter because of all his health issues. The kids have been searching for a new dog ever since. We've never had a puppy and I never wanted a puppy - for obvious reasons. My hands are already full, I cannot handle all the work (and mess) that goes with training a puppy. I was overruled. Mark and the kids saw "Hamilton" at a Petsmart adoption event last weekend and they just had to have him. I will admit, he is really cute and looks so much like our dog Rylie.
I'm not sure why it is that change is so exhausting to me anymore. I think I'm just flat.out.tired after thirteen years of chronic stress. I knew going in that switching Jack's means of life support wasn't like getting a new wheelchair - this is serious stuff. Sometimes you forget just how serious until you start messing with something that isn't broken. From what I'm hearing from parents whose kids have switched to the Trilogy - they love it, so I know getting the new vent is the right decision.
As for the new puppy - well, sometimes you just have to go with the flow. I didn't really want another dog, let alone a puppy. But, everyone else in this house is happy, so be it.
I hope this post makes sense. I'm exhausted and falling asleep as I type. Thanks for checking in my friends.