This past weekend was Elliot’s 2nd birthday party and he had a blast. We got an incredible cake from Columbus Corner Bakery. It was delicious and they went above and beyond the call of duty on the decoration.
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.
This weekend the fam went to the pumpkin patch up the road, more for pictures than for picking out a pumpkin. We met some friends up there and here are some of the pics we ended up with.
Wow. I know someone who has completed neglected their blog. Like a dried and withered chia pet I have left my blog to fend for itself against the cold vastness of the interweb. I used to be a stat ho, checking to see who was reading. I don't remember the last time I've looked at Sitemeter. My lack in blogging lately has stemmed from the fact that I felt like nothing was going on that was of much interest. It's only been lately that some interesting things have been going on, so here I am.
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:
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.
Hey guys,
Here’s a video of Elliot’s B-day party in case you missed it.
(video embedded for those on RSS)
Yesterday was Elliot’s 1st birthday, though the party’s today. It’s amazing to see how far he’s come in this short time. I remember back when we first got the news of his HLHS and the restricted atrial septum. As the picture grew clearer during those few months before birth, we had no idea how this was going to play out. We didn’t know if Elliot was going to make it through the few minutes after birth, or through his surgeries, and what that life was going to look like. To say that we struggled with faith is putting it mildly.
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!!
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.
In my office I have a print of a fly (fly fishing fly, not a tsetse fly) above my computer monitor. In fact I have two of them side by side above my desk.
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.
What a great day we had today. Absolutely gorgeous outside. I have to admit that we skipped church but we caught a webisode of Andy Stanley. The guy just blows me away. He’s always relevant to where we are and is always challenging. Just awesome. After that we got a few things done around the house in preparation for heading down to the park later in the afternoon. Around 6′ish we swung through an Arby’s drive through for a little impromptu picnic and hit Lake Bottom park for some outside time. Elliot had a ball, especially on the swing. How was your Sunday?
Today Sunette went with my mom to hear the Festival Chorus of Atlanta at a monastery just outside the big city. They left shortly after 12 and it was just me and the T-monster for the afternoon. I’ve been missing the joker since I was out of town almost all this week and had a gig Friday evening and Saturday.
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.
There’s this tough little joker I know. His body has been beaten up a little and he’s got lots of issues that nag him. Things that would make me whine and snivel, he just takes in stride. Yeah he gets ornery some times, but who wouldn’t. I really wish I could just take half of his burden for him, but I know I’m not strong enough to carry it. He knows my voice, but I don’t know that he can really see my face. That makes me sad, but to him, maybe my voice is enough. He’s a tough little T-monster and he’s got 100% of the love that is in my heart.
Choking on Air