Maddy Surgery Update #3

Hello to all the Loyal Madeline Kate Fans! Thank you so much for all your prayers and support, emails and calls over the last 24 hours! And to Kirsten and Diana for taking good care of my girls (and house!) while Glen and I were both in Indy. Love you ALL!

Maddy is still intubated, but it looks like they have stopped the Fentanyl drip. She is moving around a bit (more like flailing), but she is still asleep, thankfully. Her poor little chest is bright red with a rash from all the leads (partly from the apnea monitor at home, but piled on by all the hospital leads). But I was given the coolest tip by another SB mom: Pepto bismol! Dab it where you want to put tape, let it dry and then apply the tape. If it works for tape, just maybe it will work for leads??!!

One of the pediatric pulmonologists came in just a bit ago to do a bronchoscope while she was still sedated and intubated. The only drama Maddy provided was dropping her heart rate just a bit when they were scoping. Dr. O'Connley took samples of the secretions to test for chronic aspiration issues. Even with the Chiari decompression, she thinks it's definitely necessary to go ahead with a G-tube (gastric tube for feeding) placement. She feels like she's been getting it from all sides (brain, reflux, etc), and that we need to let her fully recover before we go back to PO feedings (PO=by mouth). She's consulting with Dr. Schaefer, the GI doctor about this. I think I agree with this decision. First, the NG (nasogastric--through the nose to the stomach) tube could also contribute to airway obstruction and cause more apnea, and it's just not a good plan for more than a few weeks. It's a very minor procedure to place the G-tube, and it can be removed without surgery/sedation and leaves the tiniest of scars. And, ever practical, I have to take the pros with the cons, and one big pro is if she's being fed via NG or G-tube, insurance will cover the formula!

Ok, about that question re: the bone removal. I told you Dr. Young (neurosurgeon) said that he would remove the top vertebrae to do this surgery. We weren't sure if it was replaced or not when they finished the surgery. He did not. He removed that top vertebrae and a small section of her skull to give the brainstem more room. He placed a patch instead, that again, will give the room needed.

The MRI from last night did show a syrinx (a cyst filled with CSF--cerebral spinal fluid on the spinal cord). They will check this again in six months to see if it collapses now that the decompression took place. (They saw this on the MRI last week...The MRI last night just confirmed it).

I do believe that's all the news for now! I am getting ready to post more pictures soon!