14 Days = Two Weeks

X-rays this morning were better. The intensivist said there was very little effusion (fluid) in his lungs according to yesterday's ultrasound. What he has is atelectasis (at-a-LEK-ta-sis) where the alveoli in the lungs collapse and can't get air. Sometimes caused by fluid lying on the alveoli. He needs to take deep breaths and cough well. I'm sure it hurts him to cough and he's not coughing deeply enough; but part of that has to do with low tone common with Down syndrome.


I told her I felt that Joel's attitude was depressed yesterday and this morning, like he was giving up because "nobody will feed me, only beat me up". She ordered simple foods and fun for Joel today.

He had physical therapy!


played a game on the iPad which required two hands!


got to turn pages in his favorite kind of book: a biology textbook!






and drew on the windows.








Had to put new NG in again today...not eating enough yet to get rid of it. Still needs and wants mask or canula, without it his SATS drop very low quickly and he will put it back on himself it. Bi-PAP Mask is used when he's lying down or sleeping now.

He ate better tonight. Had an overall busy day and may be more tired again tomorrow?



The focus in Joel's treatment now is obviously on tuning up his lungs, plus trying to get his INR/PTT (blood thinner level) to where it needs to be, because it's still way too low. Coumadin upped to 12 tonight. No current danger of blood clots around new valve as he's also still on heparin. Stopped the Vancomycin today.

New home blood monitor is being applied for but will take at least 12 weeks to get, so Joel will have many trips to the hospital lab for monitoring his blood thinner after he's home again. Investigation begins into old home monitor as it's been giving us incorrect readings and other people out there are depending on that same kind of monitor. The clotting in Joel's valve was very serious, besides the valve being too small because he'd outgrown it. It shocks me to think that he could have had a stroke and even could have died! But he didn't! I have to praise the Lord each time I think about it!


Thanks for your comments on the blog or in emails, I love to hear from you. If you've asked me questions and I havent answered them, it probably means I don't know the answers yet.
Love,
Dolores