The next step

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I haven't been so great at keeping the blog updated (have I ever?) So much has happened since I wrote this post and first discussed C's diagnosis of scoliosis, and this post from right after her MRI results.

In September, she was fitted for and got her TLSO brace. It is basically a hard plastic clamshell which wraps around her middle very snugly from her armpits down past her hips and velcros in the back. She wears this for 23 hours per day and has done extremely well with it from the very beginning. From the first day, she had taken "possession" of it and made it her own with stickers and even though some days it "bugs" her and she occasionally sneaks in more "break" time than is allowed, she knows what it's for and is very accepting of it 97% of the time. She's unbelievable.

The MRI also showed abnormalities with her kidneys and we went for an ultrasound to check that further and then to the pediatric Urologist for the results. The Urologist said that one of her kidneys is higher than the other one, but location wasn't a big deal. The ultrasound also suggested that she has a "Duplex collection system", basically, she MAY have extra plumbing between the kidneys and bladder. Sounds scary to us, but the Urologist assured us that since she doesn't have any symptoms or infections, it is nothing to be concerned about. Whew!

However, the Urologist also mentioned what the Orthopedist had about the "fatty deposit" which showed up on the MRI. When I said that we already had appointment with the Neurosurgeon, that was that. So, two weeks later we had that appointment and it was a bit less relieving then the one with the Urologist. He showed us the MRI and discussed everything very thoroughly with all of us (while C proceeded to squirm and squeal through the entire conversation).

We learned that C has a "tethered spinal cord" caused by a "fatty filum". In very basic terms, there is a thin cord that attaches the bottom of the spinal cord to the tailbone called the "filum terminale", which is normally very stretchy and can stretch as a person grows, allowing the spinal cord to move up as the spine gets longer. The fatty deposit in filum terminale makes it not able to stretch as well, thus not allowing the spinal cord to move up and POSSIBLY causing her scoliosis. The only fix for this is surgery. Here is a pretty good description of the condition & surgery where they basically have to go in and snip the terminale which will allow the spinal cord to move up as she grows and HOPEFULLY stop further worsening of her scoliosis.

I should be hearing back from Neurosurgery scheduling next week sometime about a surgery date. She will be in the hospital (Nationwide Children's in Columbus) for 2-3 days and luckily we will have use of the free Ronald McDonald house right across the street from the hospital for Hubby and Sissy to stay and not have to drive back and forth and all of us to stay the night before surgery if it's scheduled early in the morning. They also provide free parking and 2 hot meals per day for families staying there. For this we feel so blessed.

The whole situation is so extremely scary for all of us, but we are taking it all a day at a time and praying for the best possible outcome for our girl. We have described everything to C and she seems fine about all of it. Of course she has no idea, but at least she's not freaking out about it at this point. From what I've read, the worst part is after surgery when they have to lay flat on their stomachs for 24-48 hours to help prevent spinal fluid leakage and headaches. They are totally gonna have to drug her up - there's no way THIS girl will lay still that long!


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