Nicholas Update – 5/20

Hello all –

Things are progressing along, albeit at a very gradual pace.  We’re still at the rehab hospital, working on a few things that we need to get him home.  Nicholas is actually progressing pretty nicely, all things considered.  Our first week at rehab offered a few challenges, in addition to getting used to new surroundings.  He was really edgy and irritable the first 3-4 days there, which looks like it was attributable to detoxing from all of the narcotic sedatives he had while in the PICU.  That appears to have now left his system, and he’s a bit easier to deal with now.

We did our second swallow study Thursday afternoon.  It was originally scheduled for next Monday, but his bottle feeds were going well enough in the doctor’s opinion to see if we could increase his bottle feeding a little sooner than planned.  While it wasn’t a rousing success, it did show some pretty good improvement from last week – enough to increase his bottle feed volume.  They’re calling him a silent aspirator – meaning there’s still a little bit of weakness in his throat (the pharynx, to be more precise) that causes his formula to kind of stick and back up into his windpipe every now and again.  The silent part is that when he does this, there are no visible signs that it’s happening by either looking at  him or looking at the monitors to which he’s attached.  That’s why the do the studies.  While it’s still a little bit of a problem, it’s no showstopper.  Nothing to get too worried about, and we can manage it by thickening his formula and pacing his eating.  He’s still got the NG tube to make up the difference for now, but we’re hoping that he continues to make progress so that can come out.

Our first trach change will probably sometime Friday (they need to be changed every week), which is probably the one thing we really haven’t done for ourselves yet.  We’re getting pretty good at dealing with equipment, suctioning him when he needs it, administering medications and doing the daily care & maintenance of his trach tube.  It’s not that difficult, just scary as hell the first time you do it.  It’s now pretty much second nature to both of us, we’re getting better.

We’re still looking at another week or so before they’ll cut us loose.  While all of this is wearing on us a little bit (many of you have pointed out the times when I send these updates), we are seeing progress.  Things are moving forward.  Not quickly, but at least forward – which we’ll take any day over the “wait and see” days that usually preceded a big setback of some sort we had in the PICU.  Unfortunately, our measuring stick is based on when we go home, which tends to make us focus on what’s not happening versus the progress we’ve made (and we really have made a lot of progress).  We’re a little tired and strung out, but we’re holding up ok.  Working on trying to sleep, but neither one of us is haveing tremendous success in that department.  We’re ready to be done with all of this stuff and be home, and we’ll get there – but on Nicholas’ schedule.  As someone pointed out to me, “typical Bridegroom kid, doing things on his own agenda”.  We have no idea where he gets that strong will and determination from…

We know you’re all out there, and trust me – all of those offers for help have not been forgotten.  Many of you may be regretting your offers here shortly, especially the food-related ones.  We’ll let you know when we’re ready.  Like I’ve said before, it’s immensely comforting to us knowing we’ve got that big safety net of friends and family to fall back on when we need it.  And we will.

Feel free to e-mail.  Like I said before – we do read all of them (which is very theraputic for both of us).  I’ve asked a friend of mine to help me assemble kind of a “diary” web site for all of this stuff, so in the future you won’t have to rely on these reports – you can go to the site.  It’s actually going to serve another purpose – it’ll give Cathy and I a place to put some of this information, so we can bundle it up and give it to the boy someday.  Once it’s up, I’ll send the link.

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

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