A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, May 31, 2016

Questions Answered and a Plan

We have had more appointments for Nickolas so far this year than we had all last year (and last year our SB clinic was divided into 3 days). Katheryn has been feeling the difference and has asked to come to an appointment with us.

We had warned her that it wouldn't be all fun and games. That there would be lots of boring waiting.

We were going to have a busy day. With neurosurgery, ultrasound, urology, bloodwork and visiting another mommy and son at Sick Kids.

We made this appointment with neurosurgery to review all the questions I had for Nick's upcoming surgery. I haven't been having so much second thoughts about the surgery as much as questions about the surgery. I can see Nick getting tired more easily as he continues to walk so well with his crutches. But I have also seen his legs do some funky things to do this. Instead of just turning his foot in, he is turning his leg in and moving his leg from his hip.

We met with a fellow first who went through an assessment of Nick and asked some questions before Dr Rutka came in. When Dr Rutka came in I went through all of my questions written down in a book on stick-it notes.

First of all he is not going to do a spinal shunt. There will be nothing left inside Nick. I think I heard this the first appointment, but obviously I was wrong.
  • This is an example I could find online. Nick's cyst is a lot lower down than in this picture, below his shoulder blades. The cyst is within the spinal cord and is pushing the spinal cord out of place. The mobility difference that we are seeing is because of this.

Dr Rutka explained to us what he will be doing for the surgery.
He is going to fenestrate the cyst. Pretty much this means put some holes in it (in medical talk). This will allow his body to absorb the fluid.

For the surgery he will remove 2 of the spinal processes (the pointy part of the back) to get access to the cyst. But he will put these back, he called it an laminoplasty. And then it will heal.
The bones of the back are meant to protect the spinal cord, and the spinal cord is what he needs to access.

He will have about a 2" scar in the middle of his back, between his original scar and shoulder blades. And he will use absorbable sutures (not staples) so nothing has to come out.

We also talked about tethered cord. He felt that tethered cord surgery was not necessary at this time. He said that tethered cord was a much more invasive surgery and he wanted start with the least invasive option at this time and reassess after 6-12 months.
That made us feel a lot better.

Some of the other questions we got the expected answers. Miss the week of school, no swimming for 6 weeks and hospital stay for 3-4 days. He said home Mon or Tues (which is longer than 3-4 days, so we will have to see), but Nick has never gone home on the earlier days or expected discharge.
It all depends on how he is doing. There are risk of complications as well, including infection and leaking.

Katheryn and Nick spent all the time playing with all of the toys and having a great time.

We also talked with the surgical nurse about what we needed to do before surgery as well. I knew we needed bloodwork done. But when we had surgery other times with urology we also had to have an anesthesia consult and sign off by his pediatrician. She said they really only doing it if there are multiple disciplines involved.
So what this really means is that urology cares about neurosurgery (and wants everything signed off), but neurosurgery doesn't care about urology. Very simplified of course.

We had to hurry to get to his ultrasound appointment, but surprisingly we made it on time.
Nick was very interested in the ultrasound. He asked if he could see what was in his belly button. So after they looked at his kidney's we looked at his belly button. We couldn't really see the MACE, but we could see how bowel moving, and I teased him that I could see his Ninja Turtle cereal moving around in there.

Urology came afterwards. We had hoped to talk with the urology NP to come up with a plan for our hospital stay, but she wasn't there. We met with Dr Lorenzo about the Botox, he agrees that it was the deflux failing in April. But we have restarted the gelnique and he has been pretty dry again.
So at this time we aren't going with anything else surgical with urology. But in the future may be some other ways to tighten the bladder neck (which I have always believed is the problem).

Then it was time for some lunch!
I don't think that we convinced Katheryn that appointments are very boring...

Finally Nick had to get his blood taken. He was the most nervous about this. He has been asking questions, like how much blood with they take, and will it hurt. But he was very, very brave. He sat on my lap and I held him. His whole body tensed up when the needle went in, but after that he was very good. He even took a peak at it! It was only at the very end that he said that it hurt.
I told Nick how brave he was. But he told me he wasn't brave at all, because it still hurt. I gave him a huge hug! He was so brave!

After all of our appointments, it was time to make it home for a family nap!
But we all feel better about the surgery and our plan.

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