June 9 2014

Hopefully my reference to Beyonce in the title was obvious.
He drank 7 oz of milk and 2 more oz of Pedialyte.
He drank slowly and is a little out of it. He’s already being his goofy self a bit and was really excited to read “Quick as a Cricket” (like.. 7 times) and then figured out that its fun to self administer his oxygen. Once that got old he gave it a quick bite and moved on to another toy.
We learned out lesson in April when we had an expected trip to the ICU- pack some toys and distractions. They come in so handy.

He just got a dose of tylenol. For now we’re hold off on the oxy and/or morphine unless he really needs it.

Once he got his meds he fussed off to sleep and now Nick and I might try and take a little snooze here.
You probably won’t hear from us outside of this blog due to being asleep- probably for days and weeks. Is there an alternative word to...

June 9 2014

3pm ish- Otto is currently taking it easy in the ICU.
Before we were called up he was awake, drank 2oz of unflavored Pedialyte. They felt comfortable taking out his breathing tube so once he drank his drank, he fell back asleep.

He’s really doing great. We are so relieved. The weight lifted is so significant I swear we could sleep for ages.

Did you know that pagers still exist? (Or doctor friends are saying yeah dummy, I did)
Well we are feeling super cool with our pager on Nick’s hip. Circa 1997..am I right Ashley?
And the dope swag doesn’t stop there. Check out our necklaces. Ba-ling.

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June 9 2014

We talked with Dr Browd just now. He said all went really well, exactly as expected. It was very compact in there but they got into where they needed to go, did the thing, and patched him up. He said he was really pleased.

We asked him about the bone growing back and he said its VERY unlikely. That he’s not yet ever had to go back in and re-do this surgery. That its mentioned because he’s aware it can happen. We’ll have to wait and see if there’s been a positive impact on the ventricle’s situation. We’ll also have to wait to understand the timing for when we can confirm that oxygen is no longer necessary.

They’re going to try and remove the intubation tube but there is a chance they’ll keep it in for safety. They also warned us that his face may be a bit swollen since he was on his tum tum during the surgery.

Oh gosh- we can’t wait to see him. We also would like to nap...

June 9 2014

We checked in this morning, the anesthesia team, nurse team and the neurosurgery team all meet with us.
They weren’t totally pumped that in the last week Otto has had a low grade fever and runny nose. At our pre-op they took blood to see if his body was fighting a bug. We didn’t hear back so we assumed we were good. He’s gotten better rash day so that was promising too.
After some discussion this morning they decided he was okay to go.
So we gave him our kisses and cuddles and the two anesthesia guys took his back.
They gave us this fancy pager and told us that and 10 am they’d page us to tell us that the surgery was underway.
We got the page at 10:15 am so he’s been in surgery for about one hour.
UPDATE- just got another page and called.
Apparently he’s done with surgery right now.
We’re on our way up to talk to the surgeon. We’ll keep you posted xoox
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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...

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...

We wanted to have a place where we could reach out to the wonderful people of our lives who want to know what’s going on with Otto. Originally the point was to serve as a way to communicate to our people about the status of Otto’s surgery. It may evolve into something bigger than that and if it does- here is a message:

If you’ve found this blog and you don’t happen to know us- hello!
Perhaps you’re in the shoes we once wore and you’ve just come to learn that there is a thing called achondroplasia in regard to your new baby. And perhaps you, like us, are desperately trying to wrap your mind around what it all means and what you life may be like. If this is you, I truly hope that you find some peace in the words and information you glean from this blog.

If you’re looking at this blog and you know us, we are so grateful for you. There aren’t enough words to express what your support...