Friday, October 23, 2009

Quick update:
I just saw his pulmonologist this morning. She is going to order a recordable pulse-ox to monitor and track his desats. She mentioned seizures as a possible explanation. Really at this point it is a very large unknown because his lungs sound so good. It could be his airway shutting for protection from the reflux. One encouraging thing she mentioned was that if it was from the reflux she would recommend surgery to fix the hernia's before putting in a trach. I guess that is better but either way for the reflux he's looking at another surgery. Just the thought makes my stomach hurt. I was really hoping to have some more time (and healing) from the last surgery (for me mind you!).

She is also going to conference with the ENT and GI to see how everyone wants to proceed. I guess right now everything will depend on what the pulse-ox records.

Tomas sees the new surgeon on Mon. morning to evaluate that stinking umbilical hernia. Darn thing has already been fixed once, opened back up, and is now trying to close and trap his bowel with it. If he recommends surgery then we will definitely look long and hard at what else can be done while he's under to make the most of it, since, as the doctor reminded me this morning, he is a high risk anesthesia patient. No kidding!

I have to take him for his flu booster this afternoon and I'll have the pediatrician take a look at the hernia just to make sure it can go through the weekend without trouble.

Mike is taking Olivia to a ghost walk in the historic downtown tomorrow night. Have fun! I hate being scared. He's been trying to get me to one of those things forever. So glad to pass that torch on to her. It can be their special thing. Yuck.


  1. I've been thinking about you guys so much lately. I'm just finished reading all the past few posts to catch up. It sounds like you've had some ups and downs, but that things are progressing. I can not believe how old Tomas looks now. I know the thought of surgery is scary and you've already been through so much, but I do hope that things can move forward soon enough. With all hernias and the reflux, his little body just isn't doing what it needs to be doing. And about your pedi- yes total disconnect, i would of been "hi, have we met before? because you apparently don't know my kid?" I think Tomas is doing great. It's amazing seeing kids who do have some struggles grow and blossom despite it all...and all our little ones with ds do just that. They keep moving forward even when we have a hard time doing so ourselves.

  2. Sending good thoughts and prayers your way. It sounds like you're dealing with a LOT this week.