It was a hard decision.
We’re opting for surgery.
I keep thinking of how I can make this post concise and understandable. It won’t be short though. The best way is probably to start at the beginning.
Not long after we brought N home from the NICU he started having screaming fits. Not like colic. More like, “I-want-to-crawl-out-of-my-skin-I’m-in-so-much-pain” baby. The only correlation we could find is that after he relieved himself, he was a completely different – and happy – baby. But it is so hard for him to void himself. He retains urine for up to seven hours sometimes.
Back in September and October, we did a whole series of bowel/bladder tests. They revealed nothing conclusive. Completely bewildered by N’s phantom pain our GI doctor ordered a spinal MRI. He was suspicious that N had tethered spinal cord. The radiologist who read the MRI initially said it was normal. We felt defeated and a bit hopeless. That’s when we began to see the hand of God orchestrating things we could not have pursued on our own.
A friend who is a neonatologist with another local hospital system asked another radiologist read the film. This radiologist, true to his reputation, saw something the other one did not. He called it a lipoma, which is a benign fatty tumor. This was completely off the record so we had no way to get a referral to see a neurosurgeon and know whether or not it was fixable.
About that same time we went to follow up with N’s neurologist. When I told him the story, he said “I don’t need to have the report officially amended. I trust this guy. I’ll refer you to neurosurgery.”
It took two months to get a neurosurgery appointment. In the meantime we’ve been medicating N.
One of the things I’m most thankful for is a drug called Neurontin. N’s pain doctor has been prescribing it for a few months now. It’s his miracle drug. When the dosage is right he can poop/pee no problem. However, when he outgrows the dosage about every three weeks we email Dr Hurwitz and say, “He needs more drugs again.” And Dr Hurwitz delivers. I really am so pleased to have something to give him that makes him comfortable. And he sleeps well. But, I don’t know anything about my child’s true personality when he isn’t medicated. Some days he’s very engaged and some days, seems very out of it and depressed.
Yesterday was the highly anticipated appointment with the neurosurgeon, Dr. George. Like most things with N the decision to operate wasn’t obvious. What Dr. George sees on the MRI is some “fat in his filum.” From how I understand what he was saying there is fat at the base of his spinal cord that could be affecting how his nerves are working as it relates to bowel and bladder function. It could be. There are no guarantees that clipping this fatty filum will correct his pain. Since this surgery is fairly low risk, he’s willing to give it a try. Once he heard that N is failing his meds every three weeks or so, he said he wanted to operate.
I’m terrified to operate, but I trust this doctor. What choice do I have? I’m not a brain surgeon and am limited in what I have to offer my son in terms of comfort.
Dr. George also confirmed what the dermatologist said about the strange bump on the back of his head. He said that it is how his brain grew in utero. If we were going to do anything about it, it would be merely for cosmetic reasons. We are not doing surgery for cosmetic reasons. Unfortunately he’s just going to have a strange patch of hair on the back of his head and we’ll deal with it. We do need to do a repeat MRI from time to time to make sure no cyst starts growing there. I am glad to have another doctor’s opinion on that strange spot.
We don’t have a surgery date set quite yet. It will probably happen sometime in the next couple of months. We still need to get clearance by pulmonology for his airway issues and cardiology for his heart malposition. I thought I was busy before. Just need to add a few more appointments to the calendar.
I also want to say that big brother has been amazing through all of this medical drama. Everyone one calls N special because of his special needs, but M is special in his own right. I completely broke down on Thursday at my moms group. I spend so much time grieving for my firstborn and everything he isn’t getting from me, won’t get from his brother, and how N’s needs will drastically affect M’s future. I have to remind myself that he isn’t me. I tend to project all of my own firstborn issues and personality onto him. He’s not nearly as sensitive and serious as I am. He doesn’t worry or over react the way I do. He has far more perseverance than I do. Part of this may be the fact that he’s four but it’s also because he has a different personality than me. That is a gift in his situation. He continues to show me that he’s doing well. My prayer is that N will mark M in a unique way. That he will ultimately be a better man because of him. I think he’s well on his way.
Remember my verse for 2014?
“Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3
Fits perfectly here. It’s been the whole story of God revealing to us the next step in caring for our complicated and mysterious little N.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!