I’m a writer. I process and cope by writing. Even though I, obviously, haven’t been posting here on the blog, I’ve still been writing. A few near and dear to me have asked, prompted, and encouraged me to get back to posting. The entry below was originally written on April 22, 2015. I will be posting a few more entries to fill in the gaps, but wanted to let you know in two days we are heading into the operating room.
April 22, 2015
Garrett woke up around 2 or so, bad dream. He was extra whiny so hubby let him crawl in bed with us. An hour and a half later, he’s up crying because his head hurts so bad. I run to the kitchen to get some ibuprofen and upon my return Garrett says he needs to use the bathroom. I check and his diaper is full, unusual for him. We catheterize him every 3-4 hours during the day, but if we cathe right before bed, he’s typically dry all night.
“Let’s cathe Boo,” I say. I get the stuff ready and began emptying his bladder. He’s whining and crying, his head hurts and his tummy hurts. I finish up, put a dry diaper on him and his “cover up” underwear, but he can barely stand and walk back to bed.
“Can you carry me?” He cries. His right leg looks very weak and it’s struggling to support him. He’s so big now I can’t just swing him up like I used to, but I lift him anyway. We manage the short distance to my bed. There, I begin to put his legs back into the pajama pants. His right leg is spasming from toes to mid-thigh. I recognize the rhythm of the spasm as having a “clonus” feel. He settles in as close to me as he can manage to get, moaning from discomfort. After 30 minutes or so the meds kick in and he falls asleep, but my mind continues to spin.
Garrett was born with Spina Bifida, hydrocephalus, and a few other diagnosis for good measure. In his 10 years, he’s had 8 surgeries, ranging from the removal of his tonsils and adenoids to brain surgery. The above episode lead to a PJ day on the couch for him and while I held him, cared for him, and prayed for him, I started making a mental list of some changes Garrett has presented in the last few months. The concern grew. Sure, I could explain them all reasonably individually, but cumulatively it was unsettling. I had previously made notes to bring some of it up to his doctors during his bi-annual clinic appointment just a few weeks away, nothing seemed too urgent. Maybe even this most recent episode was no big deal. We’d continue to monitor and discuss at the upcoming appointment. However, I couldn’t shake the feeling that it might be a bigger issue. It was Wednesday, which I know to be a typical spina bifida clinic day. So, I called to chat with the clinic nurse coordinator, maybe we could get a couple of diagnostic tests in before our clinic date. It certainly had been a while since any tests were run to look at him neurologically.
Years back (2009) Garrett presented with some signs and symptoms that made me certain something was wrong. At that time, he was a year or so post-op from corrective surgery on both his feet. I noticed a decrease in his foot sensation and movement, particularly his right side. To me, it seemed most logical to call his orthopedic surgeon. Upon examination, the doctor told me he suspected a neurological problem. He detailed the reasoning why, one of which being an increase “clonus” pulse in his right foot during a routine reflex type test. He recommended we see Garrett’s neurosurgeon for further evaluation and testing.
Before I proceed, I’d like to preface by saying that our family thinks the world of Garrett’s neurosurgeon. Immediately after Garrett was born this man performed miracle surgery to close the open lesion of Garrett’s back and spinal cord. His approach with Garrett and with us, at that time, was gentle and patient. He gave Garrett, his body, and God the opportunity and space to correct the minimal hydrocephalus he had at birth before recommending we intervene surgically. At every follow-up, routine check-up, and interaction, I felt he and his nurse practitioners held a special affinity for my son. Also, keep in mind, Garrett deals with few of the many possible life strains that can occur with spina bifida. Many who don’t know, can’t tell anything is different simply by looking or interacting with him.
After the neurosurgeon examined Garrett, he looked at us and chuckled. He said there was nothing wrong, not only did he think everything was normal, but expressed how lucky he thought we were to have such a high functioning sb child. The symptoms continued to worsen and I continued to call on the doctors that were listening to me and shared my concern. The orthopedic surgeon ordered long-term physical therapy in hopes that professional documentation would help convince the neurosurgeon to order some tests. It didn’t and Garrett continued to decline. Granted the declination was minimal, it was noticeable, and when it’s your child, it feels magnanimous. After consulting with Garrett’s rehabilitation med doctor, the ortho ordered an MRI on Garrett’s brain and spinal cord. The test indicated that Garrett’s spinal cord was tethered, or attached to his spine, and due to growth was under duress from being stretched. If left untreated the physiological dysfunction would continue to worsen.
Commonly in persons with spina bifida, there is also a condition of a neurogenic bladder and bowels. In my terms, this means that they don’t function normally. There is often a decrease in the sensation of needing to empty resulting in incontinence, along with decreased capacity, spasms, and overall function. A tethered cord can cause this to worsen permanently.
As with any surgery, there are risks. Surgery on the spinal cord has some high ones. In spite of operating in hopes of correction and improvement, the patient can end up worse off and even paralyzed. We elected to have the surgery and had great results, largely due to the giftedness of the neurosurgeon.
My conversation with the clinic coordinator affirmed my instincts to call. She took the information I gave her to the rehab med doc and the clinic nurse practitioner and soon called me back to schedule an MRI. We were given two options for the 2-hour long test. There was availability the next Wednesday for an unsedated test or almost two months away if sedation would be necessary.
Ugh! I’m not sure any 10-year-old boy alive wouldn’t struggle to stay perfectly still for 2 hours without sedation. But for my son, it’s going to require divine intervention. On top of all of the above, Garrett also carries a diagnosis of ADHD and an anxiety disorder. He doesn’t just constantly move and have trouble focusing for longer periods of time when anxious he picks and chews his fingernails as a coping mechanism. However difficult I suspect this to be for him, we need information sooner rather than later.
I went ahead and scheduled him for the MRI next Wednesday and in the time we have leading up to the test, I will do everything I can to prepare my son to do well. We are talking about it, watching youtube videos of what an MRI machine looks and sounds like, and the importance of the information clear test results will provide. Ultimately though we’re praying. We’re constantly praying, when we’re alone, when we’re together, silent prayers, and out loud prayers. We’re praying empowering words over him and we’re praying God’s word over him.
For God did not give us a spirit of fear, but of power, love, and self-control. 2 Timothy 1:7
For anyone interested in learning more about Spina Bifida please visit http://www.spinabifidaassociation.org