Some Answers

It's taken me a few days to process everything from Toby's MRI on Thursday.  Toby also had a GI appointment this week, so let me start there, and hopefully I can sort through everything. 

(P.S. If you follow Toby's CB site - this is the same post, so I'll save you some time by posting that here instead of you having to read the whole thing!)

GI appointment - This was a follow-up to discuss how the motility medication was working.  Toby is taking flagyl 7 days a month to stimulate his motility and improve his belly distension. It is helping.  His belly still gets distended, but it's not nearly as bad as it was.  We have also been able to cut down to a bare minimum dose on the cyproheptadine (or periactin) for his appetite stimulant.  We played with it quite a bit a few months ago and have it down to where it it still helping him to eat what he needs in calories, but not have the side effects that we were seeing from it. We also discussed the MACE vs. cecostomy with the GI doctor, and also asked about a motility study.  A few weeks ago in Myelo clinic, his developmental pediatrician had mentioned that before they do the bowel surgery they typically like to do a motility study to see if the kids will be continent, and if the surgery will be effective. I like that idea just because we've had so many issues with motility. GI doctor said he wouldn't recommend an in-depth study, the fact that the enemeez enemas work as well as they do, and he's fairly continent in between is evidence that the cecostomy/MACE would be good for him.  When we get closer to doing that surgery (probably next spring/summer) we can do a sitz marker study. Basically, Toby would eat some markers that I believe have barium in them, then they take x-rays and see how fast his digestion progresses.  I really like the idea of this study - had heard about it at the National SB conference this year, and just makes sense to me.  Nothing earth shattering, but a good follow-up.

So, on to the MRI...

We were instructed to arrive at 8:00 a.m., no food after midnight, and clear liquids up until 7:30 a.m.  The MRI was scheduled for 11:15 a.m.  Afterwards, Toby would be discharged (he has to be technically admitted to pulmonary floor so they have a ventilator for him when he wakes up after the anesthesia in the PACU) and we would head over to meet with the neurosurgeon to discuss results and possibly surgery.

I have learned that nothing at the hospital EVER goes as planned. The MRI didn't happen until 2:15 p.m., and then the neurosurgeon ended up having to leave early so he stopped by the waiting room to discuss what they had completed so far (his brain), and told Bruce he would call me on Friday.  BECAUSE, I wasn't in the waiting room when he called.  I have met a wonderful new friend who's son has Spina Bifida, 22q syndrome, a congenital heart defect, and might be getting a trach next week. (Please pray for them).  Little Aiden has been through a lot, and he was in the PICU on Thursday, so I snuck up there to visit and talk to his precious mommy.   But, I missed the doctor, which was so frustrating because I wanted to walk away on Thursday with answers, a surgery date, and everything wrapped up in a nice neat package WITH a bow!  That didn't happen, and I should expect that by now, 

I'm so glad I visited Aiden and Kayla, realized that even if I had been in the waiting room it wouldn't have changed anything.  They hadn't even scanned his spine yet, so the NS wouldn't have had many answers anyway!

Deep Breath!
Are you still with me?

So, the doctor called on Friday, but I missed the call (of course). I called the NS office back, but of course there are no live people that actually answer the phone.  I tried the doctor's secretary, and his nurse (I have both of their direct lines memorized - go figure) and got voice mails.  I paused a moment to take a breath and got the bright idea of calling the main hospital number and to ask for Dr. G - directly.  Guess what?  

I was connected  - pronto, and we were able to have our long conversation, all questions were answered, and we have some dates scheduled!!

Quick synopsis of MRI:
Brain and ventricles - look great, in his opinion the ETV is working, even though we don't feel like he is totally back to baseline or what he was before the ETV/Seizure, in the doctor's words "He's safe!" For now we will let this go.

Spine - He's tethered. We knew this, all SB kids are tethered.  He has a tethered cord in the S1 region, and a pretty large syrinx (fluid filled cyst in the actual spinal cord).  He also mentioned there is a sac of fluid where he's tethered.  Before they do the VEPTR surgery (growing rods to correct the scoliosis), Toby will need a spinal cord detethering.  They don't like to put the rods in while they are tethered because as the back grows and is stretched, the spine/cord are also stretched and can cause more scoliosis and neurologic damage.  He even went so far to say that sometimes the orthopedic doctors end up having to take the rods back out, so we will do the detethering first.

The other part of this was clarifying some things that I have been wanting to ask for a long time.  One of the most commonly asked questions in the SB world is what is your lesion level?  This means where was the break in the spine, and what muscles/nerve function did it affect?   Here is a link to a photo that describes some of it (hopefully the link works).  We've always been told that Toby's level is L3/L5.  Bottom line - Toby's lesion is about that level, but his actual function is L1/L2 because he can move his legs from his hips, but that's it.  He has no quadricep muscles, and can't move his legs from his knees.  So, when they do the cord detethering they typically cut an incision above where the spine is tethered, and then work to separate it and all nerves from the scarring, etc.  The fact that Toby's level of function is much higher than where he's tethered means even if something goes crazy wrong in surgery - it shouldn't affect his function (because he doesn't have much).  I look at this positively and also want to cry because I wish he had better function than he does.

The biggest risk of surgery is CSF leak.  He mentioned that if he can't get the back closed back up properly because of leaking fluid, he will put a lumbar drain in for a few days.  Spinal fluid and a healing incision don't mix well. The surgery will last at a minimum of around 6 hours - and he even broke that down into time frames for me - anesthesia, hooking up electrodes/monitoring wires, actual incision, detethering piece, closure, and the anesthesia piece.  It's possible he will need to be in the PICU because most of the nurses on the pulmonary floor (where we always have to be) aren't comfortable with neuro stuff/lumbar drains.  He is going to ask if maybe a few neuro nurses could float to pulmonary so he doesn't need to stay in PICU most of the time.  We will see.  
We have an appointment this week to see the MRI pictures (I love this about Dr. G) - he pulls things up on the computer and explains all the detailed MRI pictures.  He will also examine Toby.  Surgery is tentatively planned for Oct. 23rd - they were working on putting the request in late Friday, so we should get an actual surgery date this week.  These dates are perfect for us because Toby can still participate in his Miracle Mile for the Nationwide Children's Columbus Marathon/Half-Marathon on Oct. 21st.  My sister and I are running the half-marathon, and my parents are also coming down from Michigan, so Grandma Fabian can stay afterwards to help out while Toby's in the hospital - planning on about a week stay.

About 4-6 weeks later, probably the beginning of December, Toby will have his rod surgery on his back.

Another deep breath - whew!!  

Still with me?

I felt much better on Friday after speaking with the doctor, and having a bit of a plan.  I just needed to be Patient!