Friday, May 3, 2013

Oliver has had a rough 18 hours. Sorry, this post gets kind of yucky, don't read if you're eating, or easily grossed out..

He's had some major gastrointestinal issues, a painfully swollen abdomen was causing lots of leakage from his gtube site. A rainbow of colors coming out that we didn't know the human body could even make! We kept trying to "vent" some of the gas through the tube but stomach contents came out instead of the air bubbles. Gross? Yes, incredibly. (I have even more respect now for nurses that deal with the bodily fluids of complete strangers on a daily basis.) The gas was causing him a lot of discomfort and is possibly being caused by the antibiotic. MLD affects all the muscles in the body, even the smooth muscles of the intestinal tract so his digestion might just be getting more sluggish as a result of the MLD. There are medications to help this speed along a little more quickly, but he's likely going to need to have his G-tube switched to a GJ tube sometime in the future. G-Tube, GJ tube differences The GJ would go directly into his intestine and bypass the stomach. This could help prevent some cases of aspiration pneumonia caused by reflux of formula. But luckily, as of this morning the bloated belly is gone, as well as several towels that were poop victims. Forget washing, those went directly into the outdoor trash can!

We've been able to keep him semi-hydrated with a mixture of pedialyte and water but with all him tummy troubles we've had to put his pump on an incredibly slow rate, and with all the leaking and retching it's hard to tell how much he's actually getting. Enough I guess, he isn't showing any signs of dehydration. He hasn't had any formula since 4oz Monday morning and 4oz diluted on Wednesday afternoon(we had to stop that feeding because he started gag/vomiting)

As of yesterday his lungs sounded better, still crackly, but there is improvement. However, as he coughs it up he gags, and gags and vomits up the gunk as it gets stuck in the back of his throat. It's awful, but it's better out than in.

Fighting MLD is a messy business.


  1. Dear Katie and Chris, I can not even try to imagine the pain for ur little Ollie u r enduring. I am so sorry. I am praying for all of u. Please know that we all care.

  2. I am praying for all of you, especially your beautiful little boy. How lucky you are to know and love him, and he, you.

  3. Sending lots of prayers and good thoughts your way.

  4. Katie and Chris, you are amazing parents. Simply amazing.