Day 7: Some troubles, but all clear by end of day

Day 7 was Sunday. Emily had been doing so well and we had managed to come down on her vent settings, but Sunday morning things started changing.  Emily started sweating, was very uncomfortable, needed more supplemental O2, and so on -- not fun.  Something needed to change.

When Emily was intubated they said they put a smaller Endotracheal tube down (see pic) and that there may be some leaking around the balloon that inflates in the trachea (C), but that it shouldn't be a problem.  Well it turned out to be an issue for a few reasons: 1) The balloon needed too much pressure to minimize the leak, 2) it is harder to exhale through a smaller tube, 3) and there wasn't much tube to manipulate at the mouth (A).  I believe it was becoming increasingly difficult for Emily to breath properly, even though she was being vented.

Anyway, a long-story-short -- We needed a tube change so we could plan her vent time more efficiently. That is not a trivial thing when working with a child like Emily who has a difficult airway (see floppy airway) -- Emily is difficult to intubate and it always requires the most skilled of anesthesiologists to get it done. They take no chances with difficult airways. So changing out a tube is risky.  However, all went well. :)

Emily has been doing much better on the larger tube. All of her numbers are better and we have weaned her pressure support back a little bit to start letting her body take over more of the breathing responsibility. SMA kids should not stay intubated too long b/c there is a potential they could atrophy more and have a difficult time coming off of the vent. When extubation time comes, we will extubate straight to BiPAP and she will do great. For now she is still pretty sedated to minimize her discomfort and anxiety, but that will need to be weaned before long as well. All in good time. :)

Emily also has continued low-grade fevers - part of the infections and virus process. As I am sure we all know, fevers really zap your energy - and it's been 12 days for Emily. :/

Thanks to the staff at Sinai for such great care of Emily AND Diana and I! -- to my parents for all of their incredible help with Annabelle - house - dog - fish - etc, for meals that have been provided, the donations to help with Emily's care, the visits from family and friends, the memory foam mattress to use on our non-comfortable chair/bed thingy, and for your thoughts and prayers. How long we are here all depends on how Emily does - I am hoping for less than a week more!

Please pray for everyone's health, Emily's vent and medication weaning process, rest and sanity for us, and comfort for Annabelle while we are not getting to spend a lot of time with her.

Peace <><


Anonymous said…
Lifting you all up in prayer! Love, Julie
Sky said…
keeping you all in my prayers!!!!!