Home Again Jiggity Jig

Aly all buckled into her car seat ready to go!

Yesterday, July 27 2012 at approximately 6:00 PM, Alexandra was discharged from Primary's after an 11 night/10 day hospital visit. Her time included: 4 lumbar punctures, a picc line, 2 EEGs, 1 MRI, two ct scans, an intraosseous infusion on each leg, numerous blood draws, an iv in each arm, a breathing tube, a feeding tube, an arterial line and a blood platelet infusion. (if you are unclear on what any of that means, by all means Google. I know I did). Out of her stay, 6 nights were in the PICU. We had two different rooms in the PICU and three different rooms on the floor.

We saw at least 20 nurses and probably twice as many doctors including neurologists, infections disease, a rheumatologist, cardiologists, a kidney doctor and  several geneticists. Still, Aly had them all stumped. They still don't know the exact cause of her seizures. She will be on phenobarbital for at least 6 months. We will be following up with her neurologists for another MRI in a few weeks and she will require physical therapy. She is already making great progress, regaining her strength. She can roll to her tummy again, and stick her legs straight in the air. Her neck is getting stronger as well, but it is still wobbly. Sometimes she is like a 15 pound newborn. She isn't as grabby, which I attribute to her arms still being tender from all the ivs and the picc line. She tolerates her therapy exercises, but will become irritable quickly if something hurts or is too hard.

She did really well on her first night at home. She went to bed at a decent hour and slept almost 10 hours. Mommy and Daddy checked on her almost once an hour for awhile there. I was surprised to find her sleeping on her stomach. It is her preferred way to sleep but I didn't realize she was back to rolling so soon! We are nervous having her home without the safety net of doctors and nurses at arms's reach, and yet home is where she needs to be for this part of her recovery. She needs rest, love, comfort and for life to get back to normal. She still needs everyone to continue to cheer for her, as this part of the fight will probably be the longest. We've all been through so much, but Aly has shown how strong she can be. She will tackle all the upcoming obstacles without missing a beat.

GO ALY!!