Wednesday, October 01, 2008
His New Wheels and Another Successful Round of Surgeries
So Braden seems to really be enjoying his new set of wheels, and we sure hope so, since they cost more than the cost of mommy and daddy's first cars combined! :-)
His therapists and entire medical team are so pleased to see him get in his chair every day. I had to laugh at Braden yesterday, when PT and OT came in to work with him, and he fussed them the entire time, and as soon as he got into his chair and they started working with him - HE FELL ASLEEP!! It was so funny. He is such his own person, we take such joy in watching his little personality continue to come to life. Although he is nonverbal, he certainly knows how to communicate unhappiness, satisfaction, and comfort.
Today they did a bronchoscopy on Braden to see what his airway is doing, and to measure him for a custom trach tube. They also took a small biopsy (doc says out of 300 he does a year, he may do take 1 biopsy sample, so I guess we are that one). We may know something as early as next week. The bronch showed that Braden's upper airway lacks muscle tone nearly completely, and therefore that's why his airway was closing off so often, and why his oxygen saturation was always well below normal. This reconfirmed that the trach was the RIGHT procedure to do for Braden. Now that he keeps his O2 sats in the 97 - 100 range, his carbon dioxide saturation is way down, and so are his seizures!! We are down from 4 - 6 seizures a day, to only 1 or 2 a day!! YEAH!!
We are still waiting for the results of the muscle biopsy, and we keep our docs and nurses busy with questions daily about when we will know something:-) Our timeline is now in the hands of what I will call the "vent gods", because we still don't have a local provider to order one for us, so for now, we are at the mercy of what has been described to us as a game of "medical CHICKEN". The local provider won't order just one, they have to have been sure there will be more -check, that's been done. The insurance company would prefer we use whatever the local provider is getting a good deal on (read: making the most money off of, and cheaper rate for the insurance company). Our specialist says he won't budge on taking anything other than this new specific vent he wants for all his new patients - it's better for us as it's smaller, quieter, lighter, and better battery life. So now the specialist won't release us from the hospital until we get the right vent (PICU daily charges are by no means cheap for the insurance company), so it will be in their best interests to just comply and give us what will be best for Braden. We are the first family to use this new vent, so at least our struggles will make it easier for the patients here in BR to follow us in getting this new vent. We are getting used to being pioneers in our own way, at least Braden is anyway. Oh well, if God has taught on anything on our journey, it's how to be patient and flexible at the same time.
So we will still be living here at OLOL for the time being, we will send an update when we have more news to share!
Kodi, Brad & Braden