Tuesday, March 20, 2012

Doing Better


The picture above was taken on Friday, before the retching event that set the little guy back a few steps. Fortunately, the past two days have been uneventful. He doesn't appear to be in pain, and he is starting to eat real food again. The most important part is the pacing - he can have a quarter cup of Fruit Loops, but he cannot have a quarter cup of Fruit Loops, yogurt, and strawberries. Monitoring the quantity of food is important - he gets gaggy the second he ingests one bite too many (and there really isn't a slow lead-up to how much is too much: one instant, he is fine, and the next, he's gaggy).

Nolan's g-tube site is leaking a little, but I've been told that is usually normal for a new site. I'm still keeping a sharp eye on it, and will call his surgeon again today. They never called me back from my voice mail left over the weekend when he was so ill, so I'm a tad irritated. I'd be more frustrated if Nolan wasn't doing better, of course - at least he is keeping fluids down and able to eat in small increments.

With the pain and retching, we stopped C-Pap therapy temporarily. His stridor is still there, and was fairly loud on Sunday night. There was a hope that this surgery would stop the stridor (it usually works pretty quickly in kids who have had success with that scenario), but it looks like the floppy airway is still floppy, despite the lack of reflux. I was prepared for this, too, since our sleep neurologist, surgeon, and the geneticist in Cleveland all warned us that the fundoplication would not be likely to stop the apnea. I'm OK with it - we have the C-Pap for the apnea and at least the fundoplication will stop the horrid reflux from causing continual infections and cellular changes in his esophagus. I hooked the C-Pap up again last night, and Nolan made it to his usual middle-of-the-night mark before waking and crying.

We have a follow-up appointment with the pediatric surgeon on the 26th, and they'll weigh him and we'll decide whether or not he needs supplemental nutrition during the recovery phase. In the meantime, he's watching a lot of cartoons and I'm trying to keep him from getting too rambunctious - a hard feat with a four year old child.

We are heading down to Myrtle Beach on vacation for Spring Break, and my mom is coming to visit the week before our trip. The kids are SO excited and I can't wait to see my mom. We're going to have a great time, especially if the weather holds up (honestly, it is going to be 83 degrees here tomorrow - unheard of for mid-March in Western NY)! My brother and sister-in-law generously donated their timeshare points for the Myrtle Beach condo, so we will have a nice place to stay that has a kitchen. Before Nolan's surgery, I didn't realize how vital that would become - having a place to store medications and clean out his C-Pap, g-tube supplies, etc. is absolutely necessary. Having a condo also means that we can easily hang out in the condo if the little guy doesn't feel well, and make his meals according to his needs (he eats little bits of food on a nearly constant basis).

I'm so glad we are on the "other side" of the surgery and heading toward a full recovery!

4 comments:

Herding Grasshoppers said...

That's an adorable picture! And I'm even 'gladder' (is that a word?) to hear he's feeling better. That's got to be frustrating when there's no warning between "full" and "overfull".

Julie

TheSweetOne said...

Hooray for timeshares and time away. Hope you all get some much needed rest... And sun!

Kyla said...

Glad that handsome dude is feeling better! I hope you guys have a wonderful vacation!

rouchi said...

Enjoy your much needed break, you totally and absolutely deserve it. Rest your nerves and hope Nolan gets better each day !!