Tuesday, September 7, 2010

We interrupt vacation nirvana to bring you crashing back to reality

Tomas is sick. He has a cold, I think. Should be no big deal, but it is. Huge deal. Gagging and choking, lots of blood in his stomach, and dropping O2 sats deal. I called all the major docs this morning and pulm bumped him up on treatments and vest therapy and started him on antibiotics. She said they are seeing the flu already this year, and she is in the process of getting him approved for his 3rd year of synagis shots (to keep RSV at bay - didn't work last year - although she swears it would have been much worse without the shots, but hey, let's give it a go!)

He also had a hypoglycemic episode yesterday morning, even though he was on a continuous feed. GI called this evening and said we needed to ultrasound his liver and move him to J feeds in the meantime. One possibility is that his stomach is not emptying for a few hours and then dumping everything at once causing a hyperinsulin response. I don't think that's the case but leaving him on J helps to eliminate it as a cause. Hypoglycemia on J feeds = definitely not dumping, definitely metabolic. I moved him to J feeds this morning anyway because he of the cold, but the whole - now the doctor said to move him to J and leave him there - makes me feel like we are moving backwards. He was only off the J for 3 months. He really wants to visualize the liver. Tomas had trouble with it in NICU and after his 2nd surgery the surgeon told me it was dark and enlarged. But that was over a year ago and nobody has taken a look since. It does not present large during exams but that could be from being on continuous feeds for so much of his life. If it comes back normal than we go to a HIDA scan (nuke test) But it requires 3 hours of motionless - in NICU they just swaddled him and he passed out, but now - who knows. After that comes the metabolic testing - which is just a blood draw so I wish they'd do that first, but they need to know what they are looking for.

Today we also had a tornado alarm and a thunderstorm (my girls are petrified - our FL house was struck by lightning and they've not been the same since) Normally, that is a  throw in the towel sort of day, BUT it made me so thankful for how wonderful last week was. Everyone did so well and we had so few issues with Tomas. Really just the overheating and a few small feeding troubles, but mostly, just perfect.
Thank you, Lord, for the chance to enjoy each other and this world you created. It was most welcome and did not go unnoticed or unappreciated.
Tomorrow - cardiology check up...


  1. Nothing like a welcome home,dose of reality,is there?

    Sending prayers for a quick turn around for Tomas.Will be waiting and watching for updates ...

  2. Are you serious???
    Keep us posted on the Little Man!

    And since you're posting I'm assuming it's safe to say the storm passed by without any issues?