Thursday, September 16, 2010

Tomas' SLP was out this morning and after two successful therapies previously he did terrible today. He has been eating maybe 5-7 bites of thick puree at each therapy and doing ok. He always has a delayed swallow and any time we try to push beyond those 7 bites he does poorly, but today after 5 bites he sounded wet, wet, wet. She now wants to wait until he is cognatively able to tell us what is going on. She even wrote 3 or 4 years old in her notes for today.

I don't know why this hit me so hard, I don't care if the tube is in for that long, or even longer, or even forever. I really don't, especialy if it is there to save his lungs. But what bothers me is that we make a little progress and then get flung backwards. If there was no hope then fine, I'd deal and all would be ok, but this whole, well maybe this time will be it, is just so much work!

And to top off the day Tomas had an endocrinology appt today and the doctor didn't even know he was in the hospital for the hypogylcemia! It was his partners who rounded on Tomas and that doc was the whole reason we had to go to a hospital 2 hours from home instead of our "home base" hosp much closer. So irritating, especially because he couldn't comment without reading through everything which he had no intention of doing right then and there. He was more concerned with giving me alternatives to the continuous feeds that could still keep the blood sugars stable than he was about getting to the root cause of the problem. Ughh, thank heavens this was our last appt. with him as our new insurance allows us to pick up an endo group back at our home hosp. I am pretty finished with endo as a whole though, today being the third endo to dissapoint me.

On a positive note, Olivia is doing much better. I can not wait until she outgrows her asthma, or at the very least the severity of her asthma, so an attack doesn't land her in bed for two days. Tomas still sounds a tiny bit rattly in that right lower lobe (yes, I have my own stethoscpoe - doesn't everyone?) so if that is still around by Mon. I'll bring him in. I'm hoping the vest will help to clear the rest out over the weekend.


  1. i wouldn't put much stock in the therapist's words. right now tomas has medical issues to address and correct for feeding to go more smoothly. and it sounds like you guys are on the verge of getting some answers.

    it is disheartening but until health issues are solved, milestones take a backseat and seem to take forever. hang in there. tomas is doing really great! he's a fighter!!

  2. I just signed up for this online med thing were I can log on and see all of Jax labs, x-rays, and notes from appointments. I love it, and it will be wonderful for me to have in Ukraine. Why do we even need doctors? We can do it on our own!