Expectations Are A Tricky Thing

So you know when people build things up so your expectations become huge and then you actually do/visit/see what was built up and it falls REALLY short of expectations? Yeah, well I’m not sure if that’s what happened in this situation or if there were other things at play – or if as I always say, it is what it is.
Earlier this week we took Gavin on a road trip on the first of two visits to a new hospital to see a group of specialists. There is nothing wrong and nothing new has developed for him, we just want to make sure that we (and his current team of specialists) aren’t missing anything. This first visit was really for the team lead and complex care nurse to get to know Gavin a little better, get his history and go over our expectations for the larger meeting in July. We brought up several questions we’d like to start discussing and for the larger team to start thinking about in anticipation of our next meeting so that we’re using time wisely. Is there some new widget or device out there that he could benefit from? Are there new medications that we aren’t aware of that could be helpful? Should we be pushing him more than we do from a communications standpoint? At what age can we start to use cool technology to help him communicate?
Now we’ve been to a lot hospitals. Big urban hospitals, small community hospitals and everything in between. And at all of them, there was one common theme. Everyone we ran into was super helpful and willing to go that extra step to help. They might not have been super friendly but at least they could give us the information we needed (and really as soon as they saw Gavin they would lighten up and smile for him). I can only explain it as a “feeling” that we got at each hospital we would go to. At said new hospital this was not the case. To saw we were underwhelmed would be an understatement. There was no “feeling”…which I KNOW doesn’t make sense but I can’t really explain it beyond that.
We were sent on a wild goose chase to find the office where we needed to be (thankfully we arrived 45 mins before his appt). No one was friendly or helpful for that matter. There was a lack of anyone available to even ask questions. And when we did find someone (volunteer, security) they were less than helpful. Sorry but you work at an extremely busy hospital, it’s inevitable that people are going to have questions – avoiding eye contact or playing around on your phone in hopes that people won’t “bother you” isn’t really going to work. And that’s really how the folks we interacted with made us feel – as if we were bothering them by having a legitimate question.
Once we finally located the office (after being sent to several different locations) the actual appointment went well. The team lead and her staff were very nice, welcoming and helpful. They didn’t tell us anything we didn’t already know BUT did validate that we were doing everything we SHOULD be (which I have to say felt good to hear)! They have a few different approaches to things we are already doing that might have a bigger impact on Gavin but the team lead wanted to get the full team’s input before going too far down that rabbit hole. Possibly trialing a different medication as well. It’s one our team has mentioned in passing but felt he might not be old enough for just yet. Obviously a longer discussion will be needed on that. BUT the BEST NEWS EVER: in 3 months, Gavin gained 4lbs!!! I know it doesn’t sound like a lot but for the amount of calories he consumes daily and then turns around and burns each and every time he tones – this is HUGE!! (Plus it proves he CAN gain weight – something I was beginning to question.)
So we have mixed feelings about this hospital. While is may have one of the top CP clinics in the country – the rest of the hospital/staff leaves much to be desired, at least in our eyes. Thankfully we only have one more visit after which most communication can take place via phone/email with limited follow-up visits. We are much happier with 4 hospitals we frequent in the CT/western MA area but we recognize that having fresh eyes take a look at Gavin is also important.
So we just keep trucking along. We go back to see Gavin’s miracle worker doc (aka sleep specialist) next week to check in on two meds he put Gavin on and see next steps (since Gav comes off of one of the meds). Then it’s time for summer camp and summer services and hopefully some much needed relaxation for all of us!

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