I haven't had to google issues surrounding my Deak in quite a while.
A long while.
I just remembered I hate it.
I hate it, but I need it.
I need to search and read and become a freaking one man band encyclopedia series.
I need it, but I hate it.
Damn Google.
Deak and I journeyed together for a yearly routine orthopedic visit at Shriners Hospital yesterday. The past two year's visits had been filled with laughter and positivity, so I had no reason to assume this visit would be any different. In fact, I anticipated going back to work an hour or so after it's scheduled time.
"Mrs. Howe, he is doing so well."
"Minimally supportive braces are all that is necessary."
"We are so pleased with his progress."
Not so much yesterday.
There were several positive comments and kind words, yet those moments were unfortunately intermingled among words like neurosurgeon and sedated MRI.
I don't like those words.
Deakon has had, since birth, what we tastefully and lovingly refer to as...a second bum hole.
Officially, a sacral dimple.
But, what it really looks like is... a second bum hole on the very bottom tip of his spine.
Over the past few months, the second bum hole has taken a new life at times.
Sometimes we laugh about it.
But, we knew.
The second bum hole had become a problem.
When Deak was three months old, our very favorite Ortho Doc noticed the dimple.
I knew it wasn't good when he called the resident doctor into our room to look.
(You learn quickly in the special needs parenting world that "looksies" never happen just for kicks)
Before I had recognized the severity, I was told that Deakon would be taken downstairs right that moment for an emergent CT scan of his spine.
What?
(Try explaining that to the 4 year old who thought she was leaving to go eat lunch in five minutes, not fun).
The CT scan done that day confirmed that Deak had some, and I quote, "funky stuff happening in his lower spine...a couple extra vertebrae..." but, there was "nothing immediately suggesting an issue, like a tethered spinal cord."
I left that day and tacked that info together with the insane amounts of information I had desperately attempted to archive somewhere inside my mind. Hopeful, that I wouldn't need to remember the specifics.
Well, I guess I do.
Deak's Ortho has always checked the spine and noted it's relative normalcy each visit until now. During yesterday's appointment, a second doctor was brought in for consult, x-rays of the neck, spine and hips were immediately ordered and completed, and a sedated MRI is scheduled for March 18th. The consult doctor, who was very kind, showed me a simple test he uses to determine if a child's spinal cord is tethered; Deak totally bombed it.
After the bombed test, I kind of checked out.
I looked normal, answered questions, made comments confirming that the doctor's suspicions were most likely accurate, and I even smiled.
I stuck my heart in my pocket, and moved forward.
Numb.
Numb until now.
Until stupid google kept flashing on my screen asking me to search it.
Stupid, stupid, google.
Google says what the doctors said yesterday:
*Tethered cords tend to worsen progressively and become more noticeable when pressure is continually used on the spine. (Deak's new standing, cruising, climbing, walking stuff is undoubtedly the culprit).
*Tethered cords can cause muscle weakness and nerve damage, making usage of the lower motor extremities more difficult.
*Tethered cords are sometimes associated with a Chiari Malformation of the brain. (This malformation happens to be in the almost exact same spot that Deakon's pre-term tumor reared its' ugly head).
*Tethered cords symptomatically effect people very differently and on a continuum. The lesser of which do not require any management, but most of which require neuro-spinal surgery. The surgery is necessary to relieve pressure on the nerves and presumably allow motor and other functions to thrive on a normal level. Nerve damage can be irreversible.
*Tethered cords, although treatable...really, really suck.
I only lasted about 4 minutes on google.
I had to hold my heart close to read the stuff, and my heart hurt too badly.
I'm determined to not worry about the future, until it becomes my reality.
Until then...the heart will stay firmly planted in it's pocket.
I am cautiously hopeful the MRI will be normal.
I am completely hopeful my little guy will be okay regardless.
Nothing like a possible neuro-surgery to help one quickly get over a bull-dozed home.
6 comments:
Oh Jenny, I wish i could come hug you. He's going to be great!
Oh honey, I'm so sorry! And I totally did the same thing when Dr. Stotts told me that Emarie would need hip surgery, was brave, even joking, then proceeded to bawl my eyes out in my car for over two hours afterward.
But hips and spines are very different. Please keep us posted, but Deak is a strong, resilient, always keep going kind of kid. And I have no doubt that this won't change that at all.
Not too long ago, tethered spinal surgery was talked about in length on the 18q post. I believe it was the Belanger's daughter Cori that had it done. And really only like two or three months ago. You may want to message them, let me know if you don't have their contact info (they're on FB and I have their email) and I'm sure they'd be happy to talk with you.
It's a good thing you look HOT in your super shiny metal suit with the pockets.
Oh my friend I know this sucks. Spend about 4 minutes on google and ignore the rest. Remy's doctor made me read horrible things that were far worse than I could even find on google. When they did his colon take down surgery. Numb is good. Because this 'crap' is dang scary. Numb allows you to function. The good news is that we live in an age and in a country where it's possible to 'do' something about it. Deak will have the very best doctors watching over him and with you and Blair he is in the best hands possilbe. He doesn't need anything more than that.
Okay, I have to start with, you have the coolest friends (which you knew. Right?) Melanie & Alisha should have lovely sashes with Super Mommy badges on them-so supportive & informative!
I just referred a friend asking about some fundraiser logistics to your blog...& found this post.
Did I mention Wiggles has the sacral dimple, has been super active & we have a Shriners appt tomorrow? I'd kinda thought so long as there was no actual spina bifida we were in the clear, but this is something we'll monitor a bit closer.
I definitely understand numb. NUMB gets things done. I'm so grateful-once again-for our C18 family that allows us to share information, give big old virtual hugs, & share support.
Whatever Deak needs, you'll have
1,001 cheerleaders urging him on!
He has a built-in, spread out, second family urging him on to new successes. Looking forward to each update, and praying for a good procedure next week.
Can't it ever just get easier? I'm sorry, even if best possible scenario is that you're worried. I remember when they gave us the stack of paperwork of 22q11 and seeing those worst case scenarios. My heart just hurts for the worry for you. Because Deak will be okay, which you know:) I don't feel like I can say it right, when I'm just trying to give you a verbal hug!
I love your blog. I love the way you word things. It's like you're in my head. I thought I was the only one who couldn't handle googling things about my daughter's 18q anymore. Every few months I'll get brave, but it's fewer and farther in between now.
My Kennedy also had to have tethered cord surgery. She has that "2nd bum hole" too which has always mystified us. I feel for you and definitely know what you're going through. Surgery is never fun, but Kennedy has been better for it. She is doing more things motor-wise that she was not doing before the surgery. She did regress on just a few slight things, but she is quickly making progress. I also would like to offer a verbal hug (()) because it's not easy. But, with great doctors and great family support you and Deak will be fine.
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