On Friday, August 30th Madelyn will be having major surgery at Children's Hospital in St. Paul. This summer we have had frequent doctor appointments and tests to help us make as informed of a decision as we could. There are risks and benefits to everything, and it's been a big weight on our shoulders.
The hope is that following this surgery, Madelyn could have an easier winter. The surgery will prevent her from being able to vomit and aspirate, which is a big cause of pneumonia for her.
Two surgeons will operate on her together to keep the sedation and intubation time as short as possible, but it will still be 2-3 hours. Madelyn will spend the first night (and potentially more) in the Pediatric Intensive Care Unit. Surgery on Madelyn is challenging because she will have a breathing tube. As everyone who spends time around her knows, Madelyn's breathing is already challenging. The breathing tube can cause inflammation in the airway making it even harder for her to breathe once it's removed. This is our biggest fear related to surgery. Fortunately, she'll be cared for by a top notch pediatric team.
While Maddie is in the PICU at Children's, Greg and I will be able to be with her as much as we want. To sleep, we will take turns in parent sleeping rooms down the hall, and we'll be provided with pagers so that the nurses can always reach us.
After Maddie is off the breathing tube and more stable, she'll be moved to a regular hospital room. Her surgeon said that best case scenario it's 3 days in the hospital, worst case it's 10+. We're of course hoping for 3 :) If you remember August 2015, Greg and I spent 19 days at Children's St. Paul. Thankfully, the regular hospital rooms have beds for parents and a fridge in the room.
We are fortunate to have supportive grandparents who are taking shifts in St. Paul to be at a hotel with Ava near the hospital, so that she can visit her sister and be with us as a family as much as possible. We have planned for Friday Aug 30- Tuesday Sept 3 (Labor Day Weekend). If Madelyn's hospital time extends beyond those 5 days, we'll have to make additional arrangements.
We are excited to take our mind off surgery this weekend as we embark on a camping trip with Sarah's work friends- getting more use out of Maddie's Make a Wish :) Next week, Maddie has two pre-op appointments (fortunately those can be done in town) and Sarah has staff development. Then, we'll head to St. Paul Friday morning.....
As of right now, I don't have any tasks or help that I need.... just your prayers and support. I'll probably reactivate the Lotsa Helping Hands account once we're up at the hospital, if a need arises.
Thanks for supporting our girl
