A couple of weeks ago, I heard from many mothers who have children with disabilities that our neurosurgeon was a complete jerk. He was said to have poor bedside manner, disregard mother's concerns, and not recognize a mother's instinct. This greatly increased my anxiety. I feared that this appointment might not give me answers, and we might receive another, "Interesting, I'm not too concerned. See you in another 6-12 months." I thought about switching doctors, but it could add to our wait time and I heard our surgeon was the best. I prayed really hard, and I fasted hoping we'd get answers and a compassionate neurosurgeon. I also asked Mike to take some time off work to go with me to the appointment. I know how powerful a man's presence can be. I performed weeks of research and tried to get some basic understanding of the spine, brain, brainstem, and vertebrae. I wrote down all of my questions in an orderly fashion, and I wrote down all of Jayson's symptoms and conditions in order of relevancy to his C1 issue. I cued up my videos, prepped his medical binder and went to bed much later than I should have.
Mike met me at Primary's and we checked in for our appointment. We got called back and anxiously waited for our doctor to come back. When he walked in, he definitely fit the description my friends had described: handsome and confident/arrogant. He sat down and asked, "So what's going on with Jayson?" I knew this would be how it would begin. No evidence of looking at his file. I listed off his symptoms in order of relevancy and he started writing, looking in his file and pulling up the MRI on the computer. The list of symptoms alone seemed to be enough to concern him. He checked out the MRI and said he thinks he knows what's going on, and he wants to be sure. He believes that Jayson's top vertebrae is in two halves, instead of one complete vertebrae. The MRI wasn't enough to confirm his suspicions, and we needed a CT scan and a couple of x-rays. I was nervous that we'd have to get x-rays another day, and schedule another appointment to come back. Instead, he told us to get the x-rays and CT done right away, and come right back. We'd discuss the results and come up with a plan.
There was a 45 minute wait for the CT scan. Enough time to drive me crazy with anxiety. Just seeing the doctor's sense of urgency made me sick to my stomach. Jayson did incredibly well for his CT scan. If kids don't stay calm, they sometimes have to sedate him. Fortunately, he took a nap during our 45 minute wait and was well rested and happy. In fact, he smiled and giggled nearly the entire time they did the CT. That's my boy! He inspires and teaches me so much about attitude!
He didn't enjoy the x-rays as much, but the radiology techs sure enjoyed him and his curly hair! They made a big fuss over him, and found him a special Tarzan loin cloth to protect the goods during the x-rays. We headed back to the doctor's office and impatiently waited to see the doctor, wondering what we'd hear. I didn't even know what to think, but I knew something big was coming.
The nurse took us back, and the doctor came in with two other doctors or residents. The words out of his mouth were words a mother never wants to hear from her son's neurosurgeon, "Well... it's what I was afraid of." He went on to show us the x-rays and CT pictures. Jayson's top C1 vertebrae was a mess. It was divided in half, instead of a complete ring. Now, children's rings become a complete ring around the age of 2. Until then, they're fragmented. Well the space between his two halves tells us his will not be a complete ring. And the other fragments should be symmetrical and be like puzzle pieces that will all fit together, with equal amounts of small spacing between them. This was not the case with Jayson's vertebrae. His were unevenly spaced, unsymmetrical, difference shapes and sizes. The doctor said, "There's just not a lot of bone holding things together. There's not enough strength and stability to hold the head on the neck. Things move too much, it gives out. It's clean what is going on. The C1 is constricted, which places occasional pressure on the chord. It may stabilize on its own, but in my experience, most kids don't. Jayson will need some type of stabilization procedure by the age of 4. 2 1/2-3 years would be the earliest I'd consider it. It's a high-risk procedure." He went on to explain that things in that area are tight and narrow, and the spinal column is narrow. His bones in that area are immature for 10 months of age. He such have much better bone quality, and bigger bones. He said, "He's just a dinky kid. Small size, small bones, and very much on the fragile side." He said there is a risk of paralysis, due to the tightening. He said where Jayson isn't moving much now, it's not as big of a concern. But once he begins walking, we'll likely put him in a neck brace. Until then, we have to watch him constantly. He can't ever be out of an adult's sight. He needs to be supported while sitting, and we need to try to inhibit his neck and head falling forward or back. We have to watch his symptoms closely. If we have another rough patch, like we did in August, we don't call, we just come in. He said to come in right away and order an MRI and come right to his office. This situation with his C1 vertebrae and narrowing around the spinal column can affect his breathing, apnea, and swallowing. So if any of those things get worse, we're supposed to come in. This also likely explains his seizure-like episodes that worry me so much, as well as his hypotonia (low muscle tone) and maybe even his nystagmus. I was shocked at what the doctor said lastly. "One of my other patients had surgery this week with nearly exactly the same condition in his neck. He has Marshall-Smith Syndrome." He went on to imply that we might want to look further into that syndrome. What??? It's soooo incredibly rare. The likelihood of another doctor even knowing what that is, is rare. The likelihood of that being brought up again is just crazy. And I thought I got rid of a lllllll thoughts of Marshall-Smith after August. I hated that it came back up again. I hated that it's still a possibility. I hated that I knew this wasn't the last time I'd hear about Marshall-Smith. (See blog post 'The Entire Summer in a Post' towards the end for more details about this syndrome).
All of this was a lot to take in. No mother ever wants to hear her son needs to have spinal surgery, especially around the brain stem. But it felt really good to have some answers. I once again felt relieved, as I have when I've received other pieces of bad news that result in treatment plans. We had a plan. We will see him in six months and get more x-rays and likely another MRI. We'll also likely get the neck brace. If we're worried in the meantime, we get an MRI and come to his office. If his symptoms get worse again, he may operate, but we're trying to wait until he's at least 2 1/2.
It would be nice if we had some time to let this all sink in, but we don't. Tomorrow is surgery day. Jayson is having his GJ tube put in (Hallelujah) and tubes in his ears, as well as a bronchoscopy, laryngoscopy, and botox injections in his salivary glands. Poor little man will be hating life, but these things should all help him greatly, and hopefully keep him out of the hospital for the duration of the winter. It seems like it's always just one thing after another. I'm hoping that after surgery things might calm down a little bit, and we can just sit at home and cuddle the little man under a blanket while the snow falls outside. That is my dream.
No comments:
Post a Comment