Saturday, December 12, 2009

Day 5 -- Some answers

Dr. Rembecki came by at lunch with some news. Her echo and ekg appear to be "normal" for Aubrey and show no change from the ones that she had in October. GREAT NEWS that it isn't anything with her heart.
Her chest x-ray (he added that one at 7am today) came back as well. He brought me printed copies of all her x-rays and that was really cool! Anyway, the hazy appearance and streaking that he saw on Tuesday and Thursday and now Saturday appear to be moving, meaning that the "goop" in her lungs is just that..."goop" and moving (hopefully on the way out:)
Her blood work came back looking good. We are still waiting on some other tests that will determine what kind of virus she might have or if it is the flu or just the common cold. That's could be just a cold.
Something new that he told us (and I am trying to remember exactly what he said) is that children with Down syndrome have 30% less air sacs in thier lungs. So when she gets sick, she has less reserve to compensate for all the goop and mucus that settle in her lungs.
So what we do know about her is that she has some "goop" in her lungs. (yes, that was his word:) Our goal is to get it out. So he is changing up her respiratory therapy to include de-mucousing her! It is not a lot of fun for anyone, but it seems to be working. We started this new treatment and she seems much better this afternoon.
We talked about her oxygen intake being all over the board and settled on this: Whenever she gets upset and has a "procedure" done and is screaming and yelling, her oxygen needs go up for quite a while afterwards. (She was at 3 yesterday afternoon and .5 this morning after a quiet night of sleep and few procedures). When she gets upset, she is moving the mucus around and clogging more/different areas in her lungs. Our goal is to try and stay calm! (I wanted to say, yeah right!)
So we are 1) degooping 2) staying calm and rested 3) staying on top of oxygen needs. All of this should translate to a steady oxygen level and we will go to weaning from there.
We talked about her future in the cold and flu season (I did not ask about her long term needs, but will tomorrow as we begin to know more). We will develope a good lung maintenance plan and at the first sign of trouble we will see Dr. Rembecki. I probably waited too long and the goop got so far out of hand that we ended up here. That doesn't mean that we will never end up in the hospital again, but her chances would be better. He also suggested that we go "into hiding" again, to help keep her from getting sick. She has been so blessed with health, that it is easy to forget that we need to be hypervigilant with germs.
Today is going much better and we are thankful. Thank you all, for your continued prayers and well wishes. We are blessed to have all of you in her life and keeping us strong.

1 comment:

  1. Ask if they have a physio staff that can move the mucos. They tap on the lungs with a firm pat and it helps move it around. It is much better than suctioning and helps alot.


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