Jabulani Jonny

Daily Reminder

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.

Sunday at the park

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?

Just me & the boy

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. 

Tough Guy

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.

Home

Arrived...3:15pm...tired...8+ hours on the road each of the past two days...got up at 4:15am this morning...a frickin' huge stack of mail...a clean house, mmmmmmm...tired...need a shower...and a haircut...follow up on hospital bills tomorrow...tired...

Philly to Durham

Well we had our follow up visit this morning with the cardiologist at CHOP to check Elliot out after his surgery and give us clearance to head home. She was pleased with how well he's doing and how good he looks and gave us our walking papers. We skidaddled back to the Ronnie McDonnie and decided to hit the road back to Georgia. Approximately 8.376 hours later we pulled into the Holiday Inn Express in Durham, NC. Google Maps had the drive clocked at 6 hours and 40 minutes. Yeah, that mighta been right, but apparently it's not smart to drive anywhere on the entire eastern seaboard between the hours of 4pm and 7pm. I updated Google maps with the following info that I thought might be helpful for anyone trying to drive south from Baltimore to Richmond.

EDIT: I realize that I could've come up with 100 more entertaining quips than "Stupid Traffic", but "Stupid Traffic" it was, so "Stupid Traffic" it is.

In Repair

Sorry for the delay in posting. Again, my attention has been on Elliot's carepage and my blog has taken the brunt of it. As you know we are in Philadelphia for Elliot's second heart surgery, which he had on Friday. The surgery went very well and he is recovering nicely. In fact, we are already in the step down unit, two days after surgery. That bodes well for getting home quickly. However, our concerns are with his lungs and how they're going to respond to the changes. It could take a while to see how they do.

We drove up on Tuesday and Wednesday of last week, 2 days from Georgia. It took us about 18 hours of drive time, having to stop a few times for the T-Monster. There's nothing like an 18 hour trip with a 4 month old to get you in the traveling spirit.

We are back in the Ronald McDonald House of Philly during our hospital stay. Actually Sunette is staying with Elliot in the room and I go back to the Ronnie late in the evening.

On a side note, I'm starting the boy off right. His dad's a tech geek, which means I'll be introducing him to the wonders of modern technology. He seems interested so far. Here you can see he's paying real close attention to the wonders of the webernets.

Heading back to Philly

Well the time has come again for us to head back up to Philadelphia for Elliot's second heart surgery.  We were originally thinking that it would be in January, but his O2 saturations have remained lower than where the doctors would like so we've moved the surgery up a bit.  For some history, Elliot was diagnosed with HLHS before birth and had his first heart surgery at 6 days old.  It'll take two more, including the one on Friday, to get his heart to a stable state. 

Sunette and I have mixed emotions about this surgery.  We're eager for it to get here, hoping that it will be the answer to Elliot's nagging issues with his O2 sats and a few other things.  Maybe he can finally live like a normal little boy and stay out of the hospital for a while.  On the other hand, we're very nervous about this procedure.  Besides the fact that it's another open heart surgery, on a 4 month old, we're worried how his lungs are going to react to this one. 

See, one of the issues with him all along has been that his lungs have increased pressure in them, which makes it difficult for the blood to flow to his lungs.  In turn making it difficult for his body to get the oxygen it needs.  Right now, he has a shunt connecting the aorta to the pulmonary arteries, so every time his heart beats to send blood to the body, part of it goes to the lungs.  So he actually has his heart pumping blood to the lungs right now.  In the surgery on Friday they will remove the shunt and connect the blood flow coming back from his upper body to the pulmonary arteries so that the blood simply drains into the lungs, rather than being pumped there.  The problem is, if he has increased pressure in his lungs, the blood may not go there, meaning he won't get enough oxygen.

So that's our concern.  We won't know until well after the surgery how he's going to do.  I'm thinking this may be a long recovery.  Our anticipation is to be at CHOP for a month or so.  We'll see. 

For additional information  here are some diagrams that show  a HLHS heart prior to surgery and then what happens in the three surgeries.  As you can see they liken it to a house so maybe that'll help you picture what's going on.  Thank you guys for the thoughts and prayers.

Elliot's Birth Video

Well since I just got my Macbook Pro, I figured I'd try out the new iMovie.  I took a few videos and a bunch of pics while we were in Philly that I wanted to combine into a short.  FYI, Sunette had a C-section, so although you can see the doctors pull Elliot out, there is no blood or any "educational" aspects in the video. 

I know that many have dog-cussed the new iMovie, versus the previous version.  I have to say that it was extremely easy to create this video.  Maybe I'm just used to the tooth pulling that comes with trying to do the same thing on a PC.  Honestly, I finished this up in about 30 minutes. 

Home again

Elliot was discharged from Egleston Children's Hospital Thursday evening after a 3 week stay.  He had all kinds of little challenges while he was there, from his O2 sats bottoming out to blood in his stool and all the other fun stuff.  We're finally back home, for at least the next four weeks, when he'll head back up to Children's Hospital of Philadelphia (CHOP) for the 2nd stage of his HLHS repair.  We might be in the hospital come Christmas time, but we're hoping we can get in and get out. 

Unfortunately blog posts have been slow in coming, and probably not very entertaining.  The blog was a casualty from all of everything that's been going on, coupled with very limited access to a computer that can reach the typepad site.  I've tried from the Blackberry and it's just no fun.

So...I wish I had more of a purpose behind this post, but it's another boring, quick update on where we are.  At Home, which is good.