Friday, August 12, 2011

Is This Week Over Yet?

Nolan has been having terrible flares in his reflux lately - last Friday he gagged and choked for two solid hours, and his eating really decreased. This week, we've had a lot of tummy pain and reduced appetite. Today, Nolan hasn't eaten anything.

Which is why I was surprised when he "baptized" the car with yesterday's lunch.

The car seat cover is now in the washing machine, Nolan has had a bath, and the car has been cleaned of the nastiness that was yesterday's lunch.

I'm so tired I can't even think straight. Nolan is fine, except for the whole not-eating tummy-hurting business.

This week can be over at any time.

There are a couple of bright spots.

  1. I found a better mask for Nolan made by Philips Respironics: it is made for children in the 15 pound-40 pound range. Nolan is exactly 30 pounds, so he should fit into the mask. It also has a forehead strap to help keep the mask secured. It is also only $99, so I bought one. I emailed the respiratory therapist (who has no idea what to do with a child as young as Nolan), so she bought one, too. Hers will be here faster, so we'll use it until ours arrives. Then we'll have her get a different mask for us to try out. That way we'll have two masks to rotate.
  2. Nolan's ear isn't leaking anymore. At least that is one thing we don't have to worry about this week!

Nolan is accepting the mask at bedtime, but he won't keep it on. There isn't much we can do about that, but wait patiently to see if he'll accept it over time. Arm restraints are another option, and we may have to resort to that if nothing else works - the "restraints" are also known as "no-no's," and are really just braces that keep kids from bending their arms at the elbows. This would keep him from forcibly removing his mask. I really don't want to have to do that, however. For one thing, he needs to be able to remove it if he is congested. Also, he vomits occasionally. So we can't have him throwing up into a C-Pap mask.

I am so, so glad we have our trip to the Cleveland Clinic scheduled for September 6. We really need some objective guidance on what to do with the little guy!


Julia said...

This too shall pass. Which sounds extraordinarily glib and unhelpful, for some reason ("Yeah, easy for you to say"), but it's the mantra that's seen me through some tough times. For some reason, they don't make an "easy button" for times like this.

rouchi said...

I agree with Julia, this too shall pass.Wishing you more strength and good things for Nolan.He is really going through too much.You are really strong and hold on there !

TheSweetOne said...

The fact that you saw yesterday's lunch nearly 24 hours later really speaks to gastric emptying being a significant issue. Has your GI suggested anything you can try to speed that along? I know there are medications though I know some of them are pretty intense. Could be a step to try before fundo and/or if the CPAP isn't the right solution?

leah said...

I'm going to ask the geneticist at Cleveland Clinic what she thinks about the whole thing. I believe motility testing is a prerequisite for doing a fundoplication, so several other tests may be ordered by the general surgeon before we went to that step. We know he has DGE, because he had a gastric emptying scintiscan a couple years' back. I'm pretty sure this will pass in a couple of weeks - he goes through occasional flares like this!

Herding Grasshoppers said...

Oh Leah,

my heart goes out to you. I have no wisdom for this, but prayers for comfort, guidance, patience and health.