6.27.17 Spine News

“And so, Lord, where do I put my hope? My only hope is in you.”

Psalms 39:7 NLT

Yesterday, Aimee and I met with the Orthopedic surgeon, along with the head of the Pulmonary department, to evaluate her scoliosis progression in conjunction with her lung restriction. We last met with this combo in December, at which point, the conclusion was surgery in the next 2 years. One of the x-rays that they use for tracking progression is a spinal traction. The surgeon pulls on her upper body while another pulls on her pelvis to get her spine as straight as possible and then a series of pictures are taken. These are stitched together into one long x-ray of the spine showing the inflexible curve. They used to take a photo of her flexible curve too, but it is just too ridiculous and unhelpful to see a picture of her bones slumped over in a sitting up position. 

December's spinal traction showed a fixed curve in her upper back of 45 degrees and yesterday's showed 50 degrees. This is the cut off point, the line where the surgeon says, "enough is enough." Aimee will need to have surgery to place growth rods this Fall before a further curve causes too great of damage or impairs her breathing beyond what she can handle. 

We plan to have them place magnetic rods, which will allow them to be lengthened with a magnetic remote and ultrasound every 4 months for about 3 years. After 3 years we would re-evaluate if the next size would be needed or a spinal fusion, depending on Aimee's growth. 

This is scary. Ed and feel pretty numb and terrified. 2 major surgeries in the next few months. Trying to schedule all the preparation as quickly as possible so that she can get through the GI surgery, recover completely, and still have time for the spine surgery before sick season starts. Honestly, even though I was surprised last time to hear that spine surgery would be coming in the next couple years... I was still really not prepared to hear "now". 

My beautiful, peaceful girl doesn't know what the journey holds in front of her. She doesn't have anxiety about the process. She is peaceful about tomorrow or an hour from now. Although it cannot be ignored and there is much to do in preparation, I am breathing in that peace she carries, the peace that is on her skin and in her eyes. She seeps it out and shares it if you sit with her and accept the gift. 

In other news from yesterday's appointment, we finally have a doctor who listened about Aimee's allergies and sent us for bloodwork! Every time I have asked, the response has been that there is no point, just give her meds if they help. I am excited, simply to know what is causing her this big challenge. Plus, as the doctor said, we need to know if she is allergic to dogs or other animals, things to which we could actually control her exposure. So, while blood draws are not uncommon, the larger volume ones are for Aimee. It took 3 attempts and a second tech to finally have success getting a decent vein. Yuck. Soon though, we hope to have an answer to this one. 

We also got another new inhaler prescribed by the pulmonary doctor for use during distress, which means I have 4 different inhaler treatments to use. For our original resistance and pride at having no medications, it sure seems like we have been humbled by turning into a home pharmacy. All we can do is pray for the wisdom to know what is the right step forward with Aimee. We pray that we will know when to say "yes" to medical interventions, surgeries, medications, and doctors. We pray that we will know when to confidently say "no" or "not that way". God is our only true light, the only hope for tomorrow.