Jabulani Jonny

This morning we had an appointment with Elliot’s cardiologist for an echo cardiogram and a general checkup.  Lately Elliot’s O2 sats have drifted lower, averaging in the mid-70′s during the day and kind of bouncing around at night.  The doc thinks his Pulmonary arteries may be clamping down a little, which restricts the blood flow to the lungs. 

Since the HLHS repair is based on a passive blood flow system to the lungs this has the effect of keeping his sats lower.  He suggested trying some medication to “relax” the pulmonary arteries, which we’ve actually asked about as early as last October while we were staying at Egleston.  Looks like now may be the time to try.

We’re still anticipating going back up to CHOP in Philadelphia the first part of next year for his third operation, so it looks like he’ll be on oxygen at least to that point.  Hopefully the new meds will help to boost his sats and the Fontan (3rd procedure) will reinforce that. 

I have to say that it felt a little strange to be back in the doctor’s office talking about going back to CHOP and what not.  Although we’ve been on oxygen, a feeding tube and plenty of meds, it feels as if it’s been forever since being in the hospital. 

Well he turns a year old next Thursday and he really is doing great.  He’s crawling very well right now.  He’s standing and learning to walk a little while we hang on to him.  He’s actually starting to eat pretty well now too, which is great.  He really is an amazing little person, very laid back and a great sense of humor.  I’ve got a video I’m putting together of all his little antics.  I’ll post it in the next couple of days so you can see how big he’s gotten.