1. Otto’s Decompression Surgery

June 7 2014

We are headed back to the hospital-

How did we get here and what are we doing?

Otto’s dwarfism comes with its own package of medical concerns and potential issues. One of which is spinal stenosis. Stenosis is defined as an abnormal narrowing of a passage in the body. I don’t particularly appreciate the abnormal descriptor but whatareyagonnado. 

So when our achon kiddos are new to this world their medical providers keep a close eye on indications that there may be stenosis of a particular part of the body- the foramen magnem. That’s the opening at the base of the skull which allows passage from of some pretty important things from inside their rather large noggins into the spinal cord. So when there is stenosis, we’ve got a problem. 

How did we get here then?
If there is no indications of neurological issues- as there was not for Ottobot, then the docs sign you up for a sleep study. When Otto was about 3 months old we stayed the night at Children’s Hospital Sleep Clinic and with all honesty, I truly believed they’d find there were no issues. We’d never seen Otto stop breathing while he slept and that is really what they are looking for. Why? Those episodes where breathing pauses - apneas - indicate that there might be that stenosis taking place at the foreamen magnum. The squeezing is disallowing the message to successfully travel “breathe body, breathe”.
Welp, Otto had 60 apneas. I think I remember there was mention that the longest lasted 10 seconds.

Where did we go from there?
First things first, Otto was prescribed oxygen at night. Battling getting him to cooperate at first is a whole post in itself. From that day until today he has .5 liters of oxygen hooked up to his schnauze while he’s sleeping.
Then when he was 5 or 6 months we had the next step- MRI. Not the most fun business since anestesia is required. But he got through it. He probably did better than us, in fact.
The result? They confirmed the stenosis. They actually something something else going on which is cause for alarm but truthfully we can only handle one thing at a time and are choosing not to loose our minds over it. His ventricles, the pockets within your brain that hold fluid, they are enlarged and slowly growing. We have to monitor it and we will. The solution for that if it before too troublesome is a permanent shunt. Let’s just ignore this for the moment since we can’t do anything about it.
I’m not entirely sure how bad the stenosis is in terms of statistics but its enough to warrant surgery. Its also not enough to show up any neurological symptom outside of those apneas.

Surgery
Decompression Surgery is our solution. They’ll be cutting at the base of his spine, shaving off one vertabrae to get access to the area they need to work. They’ll then widen that foramen magnum. The expectation is 1 night in the ICU, then potentially 4 more nights in the downgraded part of the hospital.

We’ll checkin to Children’s at 6:45am on Monday 6/9, our day will be long I’m sure. The surgery itself is supposed to last 3 hours or so but the process before and after can take a while.

Nick and I have taken the week off of work. Buster will be in doggy heaven with Nana and Papa (Nick’s folks). Grandma (my mom) lived very close to Children’s Hospital so Nick will be sleeping there and I’ll be sleeping in the hospital room with the babe.

Here is a little visual for everyone- this is of a little girl in our community who had the same surgery- a before and after:
Note- I have NO idea how severe her stenosis was compared to Otto’s