Nicholas Update – 5/9

Hello all –

I would love to be telling you it was a smooth and quiet weekend, but sometimes we don’t always get what we want.  It was a bumpy weekend, beginning Friday evening. They took him off the ventilator late Thursday afternoon, to see how his swelling improved and how well he would breathe.  While it was greatly improved from the first attempt to extubate him earlier in the week, it unfortunately didn’t last into the weekend. By Friday evening, the stridor (the loud squeaky breathing he had) got pretty bad, to the point where they called the ENT back in.  By 10:30 that evening, Nicholas ended up back on the ventilator after he decided to tire out and stop breathing briefly.  The good news was that he pulled this little stunt while in the arms of his PICU nurse (and not one of us), and we had just stepped out for our first meal of the day so we weren’t there to witness it.  Some things are just better not seen, especially considering our stress level at the time.

He’s obviously still having some breathing issues – some is swelling related, however most are not.  They scoped his airway again, and found something called laryngomalacia – underdeveloped cartilage in the larynx (voicebox)  that collapses and blocks his airway when he breathes (it’s more present when he’s working harder to breathe, like when he’s mad).  This could be related to or a by-product of the fistula they repaired on April 28th, but just didn’t present symptoms right away.

The good news is that it’s expected he will grow out of this condition; as he matures, the cartilage that forms the larynx will also strengthen to where it will no longer be floppy. In the mean time, though, we have to make it easier for him to breathe.  So we went back to surgery this evening to give him a breathing tube (a procedure called a tracheostomy), until his larynx gets a little bit stronger and more developed.  The expectation we’ve been given is that he’ll have the tube from 2 to 4 years – it all depends on how quickly he develops.  If it’s shorter than that, it’s just a bonus.  He’ll be in the PICU for at least another 7 days, and probably not very awake or coherent until Wednesday morning.  The first 24 hours they pretty much paralyze him, so he doesn’t disrupt the new “appliance”.

We purposely delayed sending this out until we were out of surgery.  While we appreciate (more than you will ever know) everyone’s concern for us, we also didn’t want to worry you or keep anyone on pins and needles.  He’s doing great right now, finally on a path that will eventually get him healthy without the rollercoaster ride that we’ve been on for the past week and a half.

This is certainly not the outcome we wanted or expected, but it’s the one we got. Nicholas pretty much made the decision for us on Friday night as to what the next step would be.  We’re still digesting everything here – as you can imagine, it’s been a long weekend for Cathy and me.  We hadn’t expected the really big parental challenges to come so soon, but they did and we’ll deal with them.  Before you know it, we’ll be experts in changing both tracheostomy tubes and diapers (just not at the same time).  We’ve been reassured by many people who see kids with these things all of the time, and other than the tube they are normal, misbehaving and unruly toddlers.  Nicholas won’t remember any of this, which is a good thing.  Mom and Dad, on the other hand, will be scarred for life – but nothing a little beer won’t cure.

I’ll send out another update once Nicholas comes out of his fog, which should be in a few days.  I’ll also try to put some more detailed information on a web page (for those of you interested in the geeky details of this ordeal), along with some pictures we were given of the bronchosope exam they did this evening.  I’ll send that link out probably with the next update.  Thanks for keeping us in your thoughts, it’s meant a lot to us knowing we’ve got such a great network of friends and family to lean on.  Bear with us on replying to all of your messages – trust me, we read them all, and we’ll eventually get replies out to everyone.

Talk to you in a few days.

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