Friday, April 8, 2011

Prayers Needed

Hanging out, looking good, in the ED
We just got home yesterday afternoon. Aaron did pretty well during the evening, 1-2 desats with some plugging, nothing abnormal. When we went to bed he was at upper end of baseline oxygen at about 3 l/m. I got up to find 6 l/m (The nurse didn't get me up???) and was told he spent the night between 4-8, once @ 10!! I watched for about 10 min & that was enough when he went to 8 l/m, so I called EMS. They came in and he continued to drop, once he was way down, although I'm not sure how far because his wave pattern on his monitor was almost non-existent. At that point we took him off he ventilator and started bagging him with 100% oxygen. Now we're in the ED & he's looking really good on his baseline oxygen, but white blood count is really high. X-ray, blood gas are fairly okay. Because we don't live around the corner, and he's so complex, they're going to keep him for observation.

I half think his concentrator was malfunctioning even though it appears to be working normally (no alarms etc). I called our home equipment company for a new one to be delivered. But this back & forth is killing me & I'm starting to wonder if he may be declining. When he's good, he looks great, but our admits are getting closer & more frequent. Any ideas? Please pray for us, all of us.


  1. My name is Brad, and Faith is my daughter. I am sitting bedside with my daughter at U of M hospital in Ann Arbor. We are working through a jaw distraction surgery right now and even though not done, it has already made a huge change. As I read this particular update, it made me wonder if you have had a sleep study done. Also I can't tell if you have a trach which would change everything I am saying, but you should check out our blog

    If you don't have a trach, a sleep study would be a great idea. We are finding many of these children have obstructive sleep apnea. It already appears the jaw distraction has eliminated Faith's obstruction and she no longer seems to have the apnea problem.

  2. Hi Brad, I am so glad Faith is doing well. I will definitely check out your blog. Aaron's lower jaw seems to be okay in size, but he has severe tracheobronchial malasia (floppy airway) that goes almost all the way to the alveoli. So he is trach/vent 24/7. But I agree, if a child is having any hidden issues, a sleep study is a great thing. I've suggested to a few different parents that they might want to look into one. Again, I'm really glad Faith is doing well & I look forward to reading about her.