Today was a huge day. Megan had the surgery to close the fistula where her tracheostomy was. I had mentioned how scary and tramatic thi.s could be - but - Megan has beat the odds again. The way she does with intubation was the real risk when on anesthesia. Normally if she came out of surgery at 9 am we would not count on her being awake enough to extubate until afternoon sometime - maybe 3ish. By 10 am Megan was fighting for all that she was worth. The respiratory therapists exact words were "We have to sedate her or extubate". There were about 8 doctors, nurses and RT's around her in a frenzy. I took one look at her rigid muscle tone and knew she was good to go. They pulled the tube and her O2 sats went straight up into the high 90's. The admit was for a mandatory one night stay in the PICU to make sure she was doing okay. After 8 hours of her doing fine breathing with no airway complications we were sprung and got to come home. Hallelujah!!! We got home at about 7 pm on the dot. Her culture DID NOT grow MRSA which is awesome - cant believe we actually killed that one. The next step is to concentrate on her seizures and her diet. I feel like it is time to come off of the ketogenic diet and go back to a casein/gluten free diet. The Keto Diet is really hard on her stomach and her reflux which is tricky in itself anyway. If we go back to a normal diet I would be able to hopefully start to introduce baby food again and let her enjoy some food. Of course we'll need a swallow study, etc, etc to make sure she is swallowing okay and not aspirating.
I have an appointment set up with an immunologist to consult with him about IGIV. It helps some kids with refractory epilepsy and infantile spasms and it can't hurt her immune system - we know it could use some help. It also is being used to treat fool allergies some so it could be a win/win or her.
I am so thankful this went smoothly. There was not an inbetween here and we knew it. Pat, myself, James and Ryan. It was looming over our existence every day. It was all or nothing - sink or swim. I cried so hard last night I thought I broke myself. Hadn't cried that much since March of 2009 when she was still intubated and pre-trach during the life choices we had to make. It was that intense. Although I know Megan's medical issues and disabilites are great and will always be there I am feeling pretty satisfied and happy right now. Thankful - Grateful - Lucky - Enamored by what an amazing child she is - by what a will she has all of her own.