Thursday, February 3, 2011

A New Set of Problems.

Sadie was finally released from the hospital on Saturday, eight days after first arriving - well, nine if you count the day she was there for her MRI.

I'll start where I left off. On Day 5, we were moved from the PICU to the 9th floor. I have to say, while we have always been impressed with the personnel at Children's Memorial Hospital, there is a level of care and attentiveness that Sadie received in the ER and PICU that we didn't see once we were moved to a floor. Our stress level rose knowing that there was no longer a nurse right outside her door all night. I understand that this is to be expected as your child's health improves, but there is something comforting knowing that a trained medical professional is keeping an eye on your child while she sleeps.

It also didn't help that our trip to nine started with Sadie crying out in pain, then the seizure cycle started up again - and for the second time during our hospital stay, she was given Ativan (a seizure suppressant/sedative) to calm her down. The exploration for the acute pain began. The doctors x-rayed her belly, which was puffy with air from being on the ventilator and high-flow oxygen. Sadie also received an ultrasound to check for kidney stones. She again began her pain cry/seizure cycle the next day, and again Ativan was administered.

We wracked our brains looking for an answer. One of the nurses suggested that perhaps her tummy was upset from not having food for so long, so we started her on Zantac for acid reflux. She seemed a bit better and the pain cries went away. Mystery solved, or so we thought...

So, we've been back at home for a few days now. Sadie seems to have kicked RSV, but with one resolution comes a new set of problems. Her seizures are again on the rise - occurring every 30 minutes or so. She's also been quite irritable lately and has been crying out for no reason. We suspect it's her new medicine, which can cause irritability. We see her neurologist this week and hope to have some resolutions.

P.S. Last week, another Aicardi Family, the Verdecchia's, were profiled on The Today Show about their daughter's brain surgery. Here is the link to the story. We were planning to write a post about this, but our friend Neil Pasher beat us to it. His question is one that resonates with us as we make difficult decisions about Sadie's care. Read his eloquent blog post.

1 comment:

  1. you and adin are such tremendous parents...sadie is blessed to have the two of you. my thoughts and prayers are with ALL of you on a daily basis. xo