This is an email I sent my family and friends this morning...
Yesterday we met with a surgeon regarding Cariyana at the University of Iowa. They finally have all the players in place for the surgery we have known she needs since her respiratory arrest 4 years ago. We have been waiting. I thought the surgery would take place closer to age 13. He says there is no reason to wait especially in light of her increasing blood pressure and continued sleep apnea.
Below is a link to a video that describes what she will undergo. There is no picture of the surgery itself just photos of the head gear and the overall transformation. Lots of words to read.
Its a 9 minute video. I hope you might take the time to watch it.
Our overall goal for Cariyana would be no more breathing tube at night. No more oxygen. Perhaps no more blood pressure pills.
The time frames in the video are pretty similar to what the surgeon described yesterday. 3 days in intensive care, 2 days on the ventilator, 2 weeks in the hospital, 6-9 weeks of the head gear. 3-4 month total process.
I am starting a list of questions for our next visit with the doctor.
We will need more discussions with the doctor and other consultations before we decide to proceed. If we proceed the question is when. It seems obvious we need to do this over summer to have the least interruption of her schooling and the start of my new academic year at the college. I would have the most support of my husband. This summer Steve is laid off. His return to work date is August 3rd.
I may need additional support of each of you to get through this in Iowa City. Especially if things would not go as planned. And for sure, the other kids and Steve will need support at home.
We have not made any firm decisions and do not intend to without more information which we might have sometime in May.
Cariyana as you know is a hoot. She says two things. "Lets just get this over with!" and "I want to wait until 2016 when the new hospital is done so I can go there." (being the experienced children's hospital patient that she is)!
Even after watching the video, she is not afraid. She is realistic and calm. Unlike the other kids, who are like "no way!"
Steve and I are overwhelmed with emotions. And we know our decision to proceed with this procedure by this surgeon at this time is a critical decision...
