8.28.15 Surgery Schedule

This past week Aimee has met with her two Othopedic doctors who both discussed several surgeries that Aimee needs. The first is a simple muscle release in her calves. The second is the big hip surgery to restructure her muscles, bones, and hip sockets. The third is the scary spine surgery to correct scoliosis and prevent further distortion of her rib cage. 

Yesterday we had some X-rays done to get the inside info. 

This is Aimee's pelvis, showing the left hip out of socket and the abnormal shape of her bones (they shouldn't be straight, but should angle into the socket). This surgery we can't wait on any longer. She is finally old enough that doing it now should be permanent. Waiting any longer will allow her to be completely out of socket and will not be fixable. 

This is a picture of her spine and the beginning of chest changes. The doctors are hoping to hold off on this major surgery for a bit longer as she is still so young. The longer we wait the less likely that she will have it done multiple times. 

We are scheduling the first two surgeries together for this November. It will mean several days inpatient, a 5 hour procedure, and 6 weeks in braces. Her first big surgery. Even when we knew it would come eventually, it is still very nerve wracking to have it upon us! 

8.12.15 Model

Aimee got to be a model last night for a local photographer. She is looking for a couple more special kids to photograph: http://youngreflectionsphotography.com/model-call/

As a sweet bonus, the photographer took a few photos of our family was she was here. An amazing gift!! 

8.11.15 Hoping for Health

I'm nervous to say it aloud, but I think the solution has been found. Aimee hasn't had a bad night since she has been on oxygen. Going from getting up 6-12 times a night to merely 1 short time is changing things for me. I am thrilled for Aimee's sake, but truthfully, I am excited for my own sake also. I am finding myself with the energy and mental capacity to get my health back in order, which for me means losing weight and getting off of anti-depressants. I didn't realize that the prolonged lack of deep sleep was the root cause of my challenge. Praying for this positive change to continue for Aimee and for ME! 

8.6.15 A Plateau

I have delayed this post for a couple of weeks. Writing feelings and future plans down is tricky. 

First off, Aimee is doing really well. We conceded to putting her on oxygen at night through her bipap about 2 weeks ago. Her Pulmonologists were unsure if this would cause her to have more central apneas, but in the end decided that it was a necessary step. I was not optimistic about this change, but was I ever wrong! Since starting her on continuous low oxygen she has gone from an average of 6 major desat episodes per night to 1-2 minor episodes. It is remarkable! We are incredibly thankful to have found a solution.

So, that being said, her carbon dioxide levels are high and she has begun to take long pauses in breathing while she is awake. At this point, she is in a stable place and we, of course, hope that this will continue. However, not knowing how long the plateau will be, the Pulmonologist has asked us to start the future conversation. He says that we have hit the end of the options with our current set up. If she continues to progress and we start to see prolonged central apneas during awake hours, the next intervention will be a trach with a vent. He says that now is the time, while Aimee is stable, to consider how far we will go and at what point we will stop adding interventions. 

It is an ugly conversation to face. I had always assumed we would do everything possible to keep Aimee with us. Now that we are further on the journey, I can see that may not be the most loving choice. Fighting and holding on tight is right and good, but there may be a line crossed in the future when loving her will be saying "enough". 

For now, we savor the day.