Toby's Summer Update

No news is always good news where Toby is concerned. Although, we have had some things going on, it’s been hard to find the time to sit down long enough to let you know how he’s doing. Overall, he’s doing well. We have gone four months without a hospital stay and that is always a success in my book, and I’m truly thankful for the downtime.

He has had a lot of appointments in recent weeks/months. He was fitted for compression socks to help with his circulation because of his legs/feet turning purple. I will say that it has improved. It’s also Murphy’s Law – as soon as we get the socks, his circulation gets better and he doesn’t really need to wear them as often. I think the warmer weather helps too.

Three weeks ago, we picked up a pair of knee splints, which are braces Toby will wear at night to help stretch out his knees so they will straighten. They are pretty tight.

Which leads me to….spinal cord detethering surgery.

The neurosurgeon and I have been doing this dance for about a year of getting to know each other and him getting to know Toby. He was new to NCH last April. He is also very conservative when it comes to surgery, and I’m thankful for that, but it’s very possible Toby need his spinal cord untethered again. It’s been quite a struggle because his left hip is so tight and barely abducts anymore. It’s causing some skin issues, issues with dressing, cleanliness, etc. It’s really tough – really tough. All of this tightness in his legs, knees, and now his left foot – which now turns up and in, considerably – are in my mind pointing to his needing surgery. Last week we went to see the orthopedic surgeon about the hip, and he said there really isn’t much he can do for him either.  The neurosurgeon wanted to see if the knee splints would help improve his knees, etc.

It’s hard to think about him having this surgery – we’ve kind of gotten used to him being so tight and drawn up together, but it’s really starting to prevent him from doing ADL’s or activities of daily living like getting dressed. His legs will draw together and you can barely pry them apart. We still help him a lot with dressing his lower body because it’s so difficult. It would take him 15 minutes to get shorts on.  Even sitting in a chair is difficult because his legs curl up underneath him. I’m amazed when I think back to just about three years ago when he was so loose, he could go from lying on his stomach to sitting, while moving his legs into a splits position. It’s hard to explain, but he just seems too young to have so many difficulties.

June 17^th, Toby got his second set of Botox injections in his hips. I thought for sure that he would need detethering surgery right away, but the Botox has bought us some more time. We saw neurosurgery last Friday and had a long discussion about it. He basically said if he did the surgery, it would be very aggressive. He would find the point where his function is lost on the spine and cut the spine right there. Of course this made me cringe. It seems so permanent and what happens if there’s a new medical development that allows him to walk later in life, but yet we made the choice to sever his spinal cord. His thinking is to minimize having to go in and detether again. The more you do it the more scar tissue you create and the more you have to do it. He said, “It’s crazy that kids like him at eight years old are in here with 30 surgeries.” I agree. He did ask if things got worse after every lengthening surgery. I can’t say that it happens each time, but over the past two years he has gotten progressively worse. The neurosurgeon is going to pow-wow with the orthopedic surgeon, and they will get back with me. We just aren’t sure what to do. A month ago before Botox I was already for the surgery because of the issues we are having. Currently, the Botox has helped a lot, his hips and knee contractures have improved – especially with wearing the knee braces at night.

August 7^th, Toby will be having surgery #30. This time he is getting a new set of VEPTR rods because he’s outgrown this set. It should be pretty routine; he’ll be in a few days. It won’t be quite as invasive as the full insertion he had about 18 months ago because the hooks stay and the rods detach and then are reattached. He does have one hook coming through his bone in his right hip, so we will know in a few weeks if they will have to fix that piece.

I apologize again for the delay in updates. We have been incredibly busy. I will definitely post updates when he has surgery in August or after we hear back from neurosurgery on what’s next.