2. Brave!
June 8 2014
Okay we know that an 8 month old probably doesn’t know what brave is but I assure you, his folks do.
So we are are doing our best to feel brave. It is hugely helpful when we feel so much love.
Small gifts, kind gestures of love and strength have been gifted to us.
Thank you- two simple words which don’t quite feel adequate.
We had out pre-op appointment at Children’s on Wednesday and we learned a thing or two.
The surgery itself generally lasts 3 hours. We’ll check in at 6:45am, hopefully the sniffles and slight fever he’s had in the last week won’t impact the scheduled surgery so assuming it doesn’t they prep him for the procedure.
The anesthesia team will do their thing, they’ll be in the OR with the neurosurgery team and then when they’re all done, Otto will go into recovery. Either in his ICU room or the anesthesia recovery room. Where completely depends on the flow of the day.
They expect he’ll stay one night in the ICU then be downgraded for the remainder of his time, 4 days or so, in the hospital if all goes as planned.
Complications would be leaking fluid post surgery (if there is an unnoticed tear in the dura), infection, the need for a blood transfusion if there is too much blood loss. We are aware that this surgery can be botched. We’re aware of a little girl who underwent this surgery and too much vertebrae was removed. This was not with our surgeon, not even in our city, state or region. Her road has been very hard so we’re hoping that isn’t our reality and we’re sending our love to her and her family.
Its also possible that the bone that is removed at the foramen magnum grows back. You heard that correctly.
Our hope is that the bone doesn’t grow back, that there is no longer a need to have oxygen at night and that we can move on. Moving on means monitoring those darn ventricles (see previous post).
I’ll be staying at the hospital 24/7, Nick will be at the hospital all the time too except he’ll be sleeping at my mom’s house nearby.
They’re strict about visitation while in the ICU but once we’re downgraded it’ll be a little easier to come see him. We’ll still be cautious of virus’s since his nasal airways continue to be quite narrow and congestion is a real problem and as we learned in April, can land us right back upstairs into the ICU.
We ask that if you’re dealing with sniffles please send your love from afar.
I think I’ll actually do an entirely separate post regarding how cautious we are about this piece- we have been very bubbled up in general since Otto was born and though a lot of that is exhaustion, much of it too is due to our bubbling him up from germs and handling his body in certain ways that couple had long term negative impact on his neck and spine. You can say it, “you guys are being so weird, where the hell have you been?”- we’ve been in the land of doing our best, that’s where. :)
Here are some fun pictures that help us feel brave.
