We had a great turn-out as you can see. Thanks everyone!

Somebody must think Elliot’s ready for potty training.

Look at that look of fear.

A couple weeks ago we sent a heartfelt email to Elliot's cardiologist at CHOP in Philadelphia.  We were concerned because Elliot is still on oxygen 24/7 and is slowly needing more to keep his saturations up.  We've read several stories of kids that were on oxygen before going in for their third HLHS surgery, the Fontan, and their lungs not being able to handle the additional bloodflow provided by the surgery.  The docs then have to go back in, undo the surgery and put them on the heart transplant list.  We didn't want that to be the case with Elliot.  We want him to ready for his third surgery so that everything goes by the book and we can move past it. 

We got a response back from the cardiologist and we were surprised to hear that he wasn't aware that Elliot was still on oxygen.  This struck us as a little crazy since our local cardiologist had just written a letter asking what could be done for Elliot's lungs.  It seems odd that he would never mention that he was still on oxygen.  So Dr. Rychik, our CHOP cardiologist, suggested we come up to Philly for a heart/lung cath to see exactly what was going on.  The plans were made and we made the two day trek up to Philly about a week and a half ago. 

We were only there for a short time, arriving on Friday for check-in and pre-op and leaving on Tuesday after he was discharged from the cath.  With the heart/lung cath, they were looking for a few things in particular:

1. What is the blood pressure in the lungs?  This was a major concern for us.  The entire HLHS repair requires low blood pressure in the lungs.  If the pressure is high, the third surgery wouldn't go well.  All along they thought Elliot's need for oxygen was due to high pressures in the lungs.
2. Is there narrowing of the pulmonary artery?
3. Are there any collateral veins that have formed back to the heart, allowing for a "path of least resistance" for unoxidized blood?
4. Does he have a lung disorder allowing for unoxidized blood to mix with oxidized blood in the lungs?

The cath showed that his lung pressures were actually low, which is fantastic news.  It means he's a good candidate for his third surgery coming up next year.  It also showed there was a slight narrowing of the pulmonary artery, but not enough to affect anything right now.  There were no collateral veins.  Both the narrowing of the artery and the collateral veins are things that could have been fixed with the cath, allowing Elliot to pretty much come off of oxygen immediately.  That's what we would have liked. 

What they found in the lungs is that he's got some Arteriovenous Malformation.  This is a slight malformation where the arteries join the veins to transfer oxygen in the lungs.  Basically it allows for unoxidized blood to mix with the oxidized and get pumped to the body, thereby reducing his O2 sats.  The good news is that they have seen where the third surgery corrects and reverses this phenomenon, however, they can't be sure because they don't know a lot about it.  This kid's a walking rarity…well, almost walking.

So we're settled back home now and not a whole lot's changed from before we went up there.  We're still on oxygen, but it looks like they're going to move Elliot's third surgery to sometime in January or February, earlier than originally thought.  He's still on his feeding tube, which means we have to follow him around with the feeding bag for the hour or so that it takes to run in. 

He is growing like a weed though and is developing very well.  He's very close to walking and Sunette's got him doing sign language and recognizing words.  He starts Algebra next week.

Sorry for the long post.  I'll keep you posted on Elliot.  There are a few other things that have happened, but I'm saving those for another post.  Got to keep something in the hopper.

(video embedded for those on RSS)

However, Elliot arrived around 8:30am July 24th and he came out pink and crying, exactly what we’d hoped to hear.  Though they were predicting that he’d need immediate surgery after birth due to the restricted atrial septum, in fact they had the OR ready next door for it, his sats were actually good enough and they decided he didn’t need that immediate operation to fix the ASD.  That in itself is a little miracle.  When they did the first of his HLHS procedures at 6 days of age, the surgeon explained that he had no idea how Elliot was stable for that week.  His atrial septum was completely closed off, which means no oxygenated blood should have been getting to his body since he didn’t have a left ventricle to pump it there. 

We spent 2 1/2 months at Children’s Hospital of Philadelphia as Elliot recovered from his first surgery and we tried to get his oxygen sats up to a normal range.  We all got home in mid-September, but did a 3 week stent in Egleston Children’s hospital in October.  We went back to CHOP for his second surgery right after Thanksgiving and were back home after one week.  That was a whirlwind trip.

So here we are after a year and i thought everyone would be interested in seeing how Elliot is doing.  Fantastic is all I can say.  Granted, he’s still on oxygen and has his feeding tube, but he’s doing extremely well right now.  He’s progressing like the little boy he is.

To help you see how well he’s doing, check out this video of some highlights from the last few months.  Happy Birthday Elliot!!

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.    

The neat thing is that whoever painted it had the name of Elliot, either first or last, but that’s what they signed in the bottom right corner.  EDIT:  Ummm, the photos are backwards so read right to left.

So every day, many times throughout the day, I’m reminded of the little buddy I’ve got at the house that I’ll one day teach how to tie on a dry fly or nymph to catch that big brown down at the bottom of that nice pool.  Here’s looking forward to the day when we can go fishing together.

We had a great afternoon, starting with a much needed 2 hour nap for both of us.  Nice.  Man…he’s getting big too quickly.  Though I still can’t get him to eat anything by mouth.  Me thinks he’s a little stubborn.  Oh well, how can you not be stubborn when you’re that cute?

EDIT:  Many of you that come by might not know Elliot’s history.  He was born with Hypoplastic Left Heart Syndrome (HLHS) and had a Restricted Atrial Septum defect.  You can catch up by hitting some of the posts on this page.  He’s had his Norwood and Glenn procedures and has a little time before his Fontan.  He’s still on oxygen and a feeding tube, but otherwise doing well.