Nicholas Update – 5/15

Hello all –

Things are progressing along – actually at a quicker clip than we were anticipating.  Good steps, but they require some adjustment.

The first trach tube change did happen on Friday, along with the swallow study (both a few days earlier than we thought).  The change went well, and the swallow study went pretty well.  Still a few swallowing issues they’re keeping an eye on at this point, but nothing that indicates that he’s going to have major swallowing issues going forward (as is the case with many other TEF patients).  We have started to bottle feed him again on a limited basis, so we’re heading down a good path that will hopefully liberate him from his NJ tube shortly.

Based on Friday’s results, they sprung us unexpectedly from the PICU late Friday afternoon and transferred us to a Pediatric Rehabilitation Center.  This is a good thing, since we’re no longer in the ICU, and it’s the next step to getting home.  The disappointing part is that we’ll be at the rehab center for probably two weeks before they’ll let us bring the boy home.  We’ve got a lot of learning to do – tracheostomy changes and maintenance, CPR, breathing treatments, meds – and learning how to use the new equipment we’ll be getting.  It’s pretty overwhelming right now, but we’re starting to digest things a little better.  The expectation they’ve given us is a couple of weeks – we hope it’s shorter, but that’s what were working with at the moment.  Everything is subject to change at a moments notice (as we keep finding out) so we’ll see how it goes.

NIcholas is doing pretty well – progressing as well as we could expect at this point.  This will be a big week (or two) for us, as we’ll see all of the therapists and doctors a little more (as opposed to on the weekend).  And lots of learning for us.  With that in mind, and considering our new surroundings, we are asking that people not drop in for surprise visits.  Please don’t take this the wrong way, but the facility where we’re at now is simply not conducive to visitors.  The room gets pretty cramped with Cathy, me, Nicholas and a nurse.  It’s also a very hands-on facility for the parents, so we’re actually pretty busy when we’re there anyway.  There will be opportunities to visit when we get home and get settled – it gives us all something to look forward to down the road.  In the mean time, email is probably your best bet.  Like I said before – we do read all of them (which is very theraputic for both of us), but we may not respond right away.

As always, our thanks to everyone for their thoughts,prayers and support.  More news in a few days.

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