Nicholas Update – 5/12

Hello all –

We’re finally taking some steps forward (for a change) .  They took Nicholas off the ventilator Tuesday at 4:00PM (about 18 hours sooner than we expected), and he’s doing great.  He’s on a very small bit of oxygen (21% – room air by PICU standards), which is no big deal.  The oxygen line he’s got now is more for warming and humidity than anything else, since his normal warming/humidifying mechanisms are bypassed right now.  He’s no longer on any intravenous medications (those stopped yesterday), so the only tube in him right now is the NJ tube for feeding.

There’s a good possibility that they will do the first trach tube change on Friday (a few days earlier than we thought).  A few days after that, we will do a swallow study to make sure that he’s able to swallow well (so he doesn’t aspirate into his lungs – again) and to double check the repair to his esophagus.  Once we get past that, we’ll start to bottle feed him again.

Not sure when we’ll be home yet.  Once we leave the PICU, we’ll either go to a regular floor in the hospital or to pediatric rehab.  The rehab is a definite stop on this journey, as this is where Cathy and I (and a few select others) will learn what we need to maintain his airway.  Cathy’s already getting a short course in the hospital; the nurses helped her suction out his trach tube yesterday afternoon, which she did with no problems.

He’s breathing much, much easier, his color is great, and he’s acting a little more like himself.  It’s nice to see his face again (which was covered with tape), and his expressions – he did his little “piranah” movement the other night toward the pacifier, something that he’s always done.  It was at that point that I realized that everything is going to be ok.  It’s just going to take a little bit of time.

As always, our thanks to everyone for their thoughts,prayers and support.  I don’t have that “reference page” built just yet (sorry – been busy), but I will.  More news in a day or two.

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