Friday, April 24, 2009

Stoma closure

Kate's stoma was closed today. Dr. Jacobs said he could barely see it on the inside. Her incision is covered with a small bandaid and she's eating like a champ. More later.

Wednesday, April 22, 2009

Chatty Kate

I'll do a more complete post about Kate's speech, but for now, here's a video of her talking from a week ago:

Sunday, April 12, 2009


At the end of March, we went CHOP for a pre op visit with Dr. Jacobs. We assumed this was a formality and that we'd sign the consent forms for Kate's stoma closure procedure. During the visit, after the staff complimented us up and down about how great Kate was doing (immaculate stoma, on target speech with no evidence of a delay of any kind, typical 29mos old behavior) Dr. J tells us he will do a bronchoscopy on 4/24. If her airway has grown, THEN he will close the stoma. If it hasn't, well then he may want to leave it open a bit longer. HUH??? We were sideswiped, but recovered enough to agree with him. Still, the thought of him leaving her with an open hole in her neck for a long brutal summer horrifies us both, so we're chosing to just go with it and hope for the best. Her sleep study was normal, her breathing at home normal. She used a pulse ox while sleeping for close to 6 mos post decann with it alarming maybe 3 times total. She's fine -- but still. One never knows what he'll find in the OR.
Another thing...Kate hasn't been intubated for sedation since November of 2006. Intubation (or being on a ventilator post op) is what caused the stenosis in her airway that kept her trached so long. We were nervous to have a tube shoved down her airway again, so we asked for it to be noted on her surgical file. Not only did they note it, they had an anesthesiologist call us to discuss our concerns. He was nice, slightly patronizing, but nice. He assured us they'd do their best, blah, blah, blah. I also emailed Dr. Jacobs to let him know we'd spoken to anesthesiology, etc. His response was an email to me that simply stated:
"she was intubated for scope in July and did fine. I have routinely intubated her for scopes, and she hasn't had issues. She'll be fine."
Ok then.