If you are reading this post you are likely a friend or family member who knows and loves our little Linleigh, and/or was simply curious after my cryptic facebook post this past week. Frankly, there is just far too much to share on social media without being inundated with questions. So I decided to start a blog to journal and share my (our) journey. I'm actually 8 years, 8 months, and 17 days into my motherhood journey. And its been...eventful, to say the very least! I'll recap as needed as I journal, but for now an update on what's been unfolding the past few months and most importantly this past week.
My mommy heart is heavy these days. Plagued with countless emotions as things are drastically and quickly changing for our little buggie.
For those who may not know, Linleigh has quadriplegic spastic Cerebral Palsy (CP) due to a traumatic brain injury caused by Hypoxic Ischemic Encephalopathy (HIE) at birth. {HIE is basically doctor talk for saying she suffered from a lack of oxygen and blood flow due to being wrapped in the cord.} Along with CP comes countless secondary diagnoses. Currently 3 of her underlying diagnoses, spasticity, hip displasia, and scoliosis all require surgical interventions. And while that in and of itself is a lot to digest. Each surgery has its own urgency, risks, timeline, and recovery to manage while not jeopardizing the success of the others. She is looking at 3 surgeries...Selective Dorsal Rhizotomy, Hip Reconstruction, and Spinal Fusion in the next 1.5 - 2 years. YIKES!
Where do I start?!
Spasticity is a condition involving overactive muscle contractions caused by disrupted communication among the brain, spinal cord, and peripheral nerves. We have been treating Linleigh's spasticity with botox injections for years and last summer began traveling to Cincinnati to receive both phenol and botox injections. Botox is injected into the muscle and works by blocking the chemical signal between nerves and muscles that makes the muscle contract/tighten. While Phenol injections are applied directly to the nerve and usually in the larger muscle groups. Earlier this year it became increasingly clear this treatment plan wasn't enough so we sought consultation with a neurosurgeon for surgical options to treat and manage the pain associated with her severe spasticity.
Meanwhile, Linleigh has been followed by Ortho here in Columbus for years monitoring her scoliosis and her hips for displasia which children with CP are prone to get. In 2017, Linleigh's scoliosis curve changed over 20* in 6 months and the doctor continued to down play my concerns. So in November of last year we started seeing a new doctor in Cincinnati who shared our concerns. Linleigh's scoliosis continues to worsen, but at a much slower rate given the intervention of a back brace, and finally having her wheelchair adjusted after 9 months of waiting. At this point her scoliosis curve was 54*. The degree of curvature has to be closely monitored, because there are so many factors. At 60* surgery is an option, however, 10 years old is the earliest they prefer to do surgery, but they don't want her to reach 70*. It's quite the balancing act.
In June, we went for her routine spine and hip xrays. Dr. Ortho decided it was time to start discussing surgery to correct her hips, but was pleased with the minor change in her curvature. Since spasticity plays a role in her scoliosis and hip displasia, we advised him of our up coming consult w Neurosurgery. He was eager to hear their recommendations and scheduled us for a follow-up in 3 months to discuss possible hip surgery for early next year.
In August, we met with the head of Neurosurgery here in Columbus and after a fabulous very informative appointment we began the process for scheduling a Selective Dorsal Rizotomy (SDR) surgery. Due to the logistics of the surgery, we have to stop all spasticity treatments for a preferred 6 months. This puts surgery in January of 2019 and also means postponing her hip surgery, as surgical interventions for spasticity need to proceed orthopedic surgeries. In preparation for the surgery, Linleigh also needs a spine MRI and one was scheduled for December 14th.
A few weeks ago we returned to Cincinnati for her routine hip/spine xrays. Unfortunately, Linleigh's spine and hips have significantly change in the past 3 months. Her curvature is now at 62*. And Dr. Ortho would prefer to do hip surgery now, however, he agrees with Dr. Neuro that the SDR be first. They both also prefer 6 months between the 2 surgeries. Dr. Ortho can't say for certain how much time we have before we absolutely can not wait any longer to do the hip surgery. However, the longer we wait we risk the need for a more intense surgery and a greater chance for chronic pain after. He encouraged me to reach out to Dr. Neuro and see if he would consider moving up the SDR. His hope being the sooner we do the SDR, the sooner we can do the hips and the greater the chance of having 6 -12 months between the hip and spine surgery.
So that night I sat down with all the information and typed an email to Dr. Neuro asking him to reconsider the details of Linleigh's case and the timing for surgery. After a week of no response I was getting antsy but told myself to hang tight for a few more days before following up.
Tuesday morning while sitting at Bible Study I received a call from a Nationwide Children's number so I stepped out to answer. It was a lady from pre-registration calling for Linleigh's MRI on Monday October 1st. WAIT! WHAT?! Who ordered this? MRI of what? The spine?! I know she thought I was crazy as I'm sure did our lovely church staff member Susan, who sat close by in the lobby and handed me paper and a pen. But yes indeed, Dr. Neuro had requested a spine MRI. I could not wait to call Corey and tell him because if this meant what I thought it meant?! My heart was racing. I finished answering her million questions for the sedated MRI and called Corey. I was barely on the phone long enough to get the words out "her MRI is Monday! this coming Monday!" When I received another call from a Children's number. (If you aren't a local medical mama 614-722-xxxx is always Children's). I quickly told Corey I would call him back and answered. It was Dr. Neuro's assistant calling to let me know, if October 1st works for us someone from MRI would be calling me to pre-register. HAHA! I told her I just spoke with the lady and quickly asked, "does this mean he's moving our surgery?" She said, "Does October 31st work for you?" Indeed it does, we will make whatever date work!
My heart is racing now just thinking about it! One e-mail and a phone call changed everything. It's exciting and nerve wracking all at the same time. It seems very counter intuitive to be excited for your child to have surgery. But the pain and discomfort she endures due to the spasticity even with treatment let alone forgoing treatment for the time being...it's bad. And tight muscles also mean more pull on her hips which also means more pain. Not to mention the scoliosis which causes muscle spasms in her back. It's all so much for her little body. It's interfering with sleep, increasing her seizure activity, and overall makes for a very uncomfortable little lady. It's heartbreaking to be helpless. But we are making the best decisions we can given the circumstances at the moment. And I am beyond hopeful for all she stands to gain from this surgery.
I can't wait for October 31st to get here! But I have a SUPER busy October to help pass the time! I redid my monthly wall calendar last night for October and we have an MRI, ophthalmology appt, ENT appt, Audiology appt, dermatology consult, 3 dentist appts, 10 therapy appts, 3 parent-teacher conferences, 1 birthday party, 2 halloween events, a school walk-a-thon, and ONE SURGERY!
And then we will be in the hospital for most of November, but more on that later.
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