Tuesday, March 4, 2008

Meeting with Dr. Black

Erin and I just had a meeting with Dr. Black. Here is what we can tell you:
  • As stated previously, Aidan will be "paralyzed" (i.e., drug-induced) until Friday. At this point, they will start easing off the drugs and begin assessing how well he responds. The paralysis is so the trach will "mature" (i.e, the skin surrounding the hole can get used to it being there) and reduce the chance of any scarring.
  • Aidan has been placed on Clonidine in an effort to further control his sympathetic storms. This is being done transdermally (like a nicotine patch), and the patch works for a week before it has to be replaced.
  • Erin and I will have to learn how to change his trach tube. They hope to have us watch Dr. Hoover do the first one so we will have an idea of how to do this. Dr. Black assures us that once we learn, that it will be easy to do and we won't think much of it down the line. The best thing is that after the first change, we'll be able to hold him!
  • Dr. Black is looking at Aidan leaving PICU and moving to an inpatient rehab facility (we have firmly decided on Levine) by the middle to end of next week. Rehab time is still looking at 8-12 weeks, but he said to not be surprised if Aidan takes as little as 4 or as many as 16 weeks to get through this next stage of recovery. We hope to have him home and starting outpatient therapy by Evan's birthday (June 22).
We have another family conference at 1PM 11:30AM on Friday. Dr. Black wants to do these on a weekly basis for as long as we are at the hospital.

1 comment:

Yvonne said...

Thanks for all the information. It really helps us. Our one month old daughter is going through the 'brain storms'. She has been violently shaking like you describe your son doing. Again thank you for writing on your blog and telling your story.