(So- I updated a post on Reddit and since it gives most of the details about what’s new, I just cmd v/p’d it here. More details and photos to come, when it’s no longer One AM.)
We’re updating the blog as much as we can (https://juniperjude.com), but I thought I’d drop in and say thanks to those that reached out on Juniper’s behalf.
We got a sort of bitter-sweet (and somehwhat confusing) response from KK. The good parts first: her file made it to the medical director, was reviewed, she reached out to Juniper’s chief pulmonologist for guidance and more detail on Juniper’s state. The fact that the medical direct reached out personally is encouraging. She was given very serious consideration.
The medical director’s response, as it has been translated to us, was that Juniper WOULD be an excellent candidate for KK’s program.
Now for the mixed bag of news. Her chief pulmonologist is a fantastic doctor named Dr. Debord (i think that’s how you spell it.) Dr. D advised KK’s medical director that she didn’t believe Juniper’s breathing was strong enough to sustain 2-3 hours (or more) of physical therapy.
We were advised (again, grrrrr) by Dr. Debord and the folks at Children’s Hospital Colorado that they recommend a tracheostomy. We were initially told by a sneaky nurse practitioner named Anna that, “Juniper will be accepted, if you do the trach, when do you want to schedule.” After getting clarification, the actual response was, “we will consider her, again, if you choose to do the surgery and once she’s gained some pulmonary strength.” After a lot of prying, CHoC acknowledged that the medical director of KK wasn’t the person recommending that surgery, it was, again, CHoC.
The fact that they would consider taking her with a tracheostomy is a pretty big deal. They have very few spots (so we’re told) for kids with those types of respiratory needs. But, even if they accept her (after the surgery, after months of recovery and hopefully improved breathing) she would then go on a wait list and without actually saying it could take 6mo to a year to get in, they said 6-1yr.
Another option was to request a 2nd opinion from John’s Hopkins pulmonary team, which is something the KK intake director suggested we do. And while this is something we want to do, we want to do this after we’ve gained some ground with airway clearance.
So, we made a decision to not get that surgery right now. Instead, we’re opting to ligate 2 of Juniper’s salivary glands (she has over 40, so it’s not the end of saliva, just a way to help manage secretions without a tracheostomy), in an effort to support her breathing that way.
The rationale is:
1) this won’t have serious long term consequences. It’s a relatively common surgery, both in children like Juniper and other’s that have swallowing disorders (think stroke, brain damage from car wreck, etc). We’ll know relatively quickly after the surgery how it improves her airway and we can always go to the tracheostomy if she’s still having problems.
2) We don’t believe a tracheostomy is a good choice for Juniper and we want to avoid it unless it’s the only way to keep her safe. We’re currently managing respiratory with 24/7 bipap/avaps (vent).
3) **most importantly, if we are able to get her sufficient airway clearance with salivary ligation, get an “OK” from her pulm team for rehab, the wait list is much much shorter at KK. And we’ll know in relatively short order if this is going to be affective or if we need to try something else.
So, the salivary ligation surgery is set for early September. In the mean time, we’re at home and Juniper is doing very well with her regiment. It’s a little demanding (q4 treatments, round the clock), but neither Juniper, nor her mom (danielle), nor I mind the extra effort. She’s much happier at home and tbh, we do a better job supporting her here.
Again, thanks to anyone that reached out on Juniper’s behalf. I can’t tell you how overwhelmed I am by the support we’ve received. I would love to thank each and everyone of you in person some day, regardless of outcome, but hopefully with Juniper walking along side of us.
I mentioned the blog, but we also started a FB page for updates, and would love to have anyone interested in following progress to follow. But also, i know there are other parents out there going through similar things and Danielle and I always enjoy talking to and listening to those in a similar situation, so please feel free to reach out, even if it’s just to say, “hi.” https://www.facebook.com/juniperjudewest/
All the best and hopefully we’ll have another update soon, with more decisively good news.
