Ethan's MMA Surgery

Hello blog. Long time, no talk. This will probably be long because, well, I'm sitting in a PICU room with nothing to do but write (or read, but that will put me to sleep and even though I need to sleep, I just can't right now). ***I wrote that this morning and then got sidetracked through the day. Don't judge, LOL!***

Recap for anyone who doesn't know what surgery Ethan had done and why. Yesterday, Ethan had a maxillomandibular advancement (MMA) or bimaxillary advancement surgery for his severe sleep apnea. Common questions:

• Can't he just wear a CPAP mask? No. Ethan's sensory processing disorder/autism makes it impossible for him to be compliant with a mask.
• Wouldn't a trach be the next step? Typically, yes. Ethan is not typical, nor will he ever be typical. He still pulls at his g-tube site and actually pulls his tube out at times. If he were to pull at/out a trach, it could be more dangerous and life-threatening so a tracheotomy is a hard no.
• Sleep apnea isn't that big of a deal, right? Sleep apnea is a BIG deal. Your body is being starved of oxygen which you need to function. Your organs all need oxygen to function. If your organs aren't functioning, they start having problems. {If you have sleep apnea, eh hem- parentals!, please get treatment!}
• What about Boston? Boston/Cincinnati didn't work out, unfortunately/obviously. There were multiple reasons, but mainly insurance problems. Oh, and the fact that the fine print of the study would've excluded because of his lung disease and aspiration risk. So, I wasted a whole lot of time trying to make it happen when it was never going to happen. Moving on...

Ok, so after the initial "hell no" response from both Scott and myself in regards to the MMA, we were left with it being our only option left if we were going to make an attempt to better his life with minimal apnea. We didn't come upon this decision lightly and it kind of tore us up that this was what we had left to choose from, but at the same time, we are thankful that we still had an option left to try.

Yesterday, we checked in at 8am. We were told that the surgery would take close to and possibly even longer than 8 hours, so we anticipated him being wheeled back by 10am. This is how it went down:

• 0800 check-in
• 0940 brought back to prep. During prep, we are informed that Ethan's AAI x-ray screening that he did during pre-op last week came back POSITIVE for AAI (Report: Dynamic instability at the atlantoaxial joint, as evidenced by approximately 5mm of anterior migration of the anterior arch of C1 with respect to the dens on flexion, which is completely reduced in neutral and extension positioning). NOT welcomed news, but good to know before his neck would be manipulated in surgery. This made our surgeons job a wee bit more challenging, but he's pretty awesome and was up for the challenge.
• 1100 Ethan taken to OR
• 1200 1st update. All is well! Ethan is a pro and went to sleep without complications. They inform me that surgery began about 5 minutes prior to the call.
• 1300 2nd update. He's doing well. Nurse asks what color we'd like his arm casts to be. Since Ethan looks so good in orange or lime green, I give them the option between those colors (they chose lime green).
• 1430 3rd update. Doing great and everything is on track.
• 1630 4th update. Doing awesome! Surgery should be done by the next update. This was a pleasant surprise since we were gearing up for 8 hours and that would only make it 5 hours!
• 1721 5th update. Dr. Runyan comes out into the waiting room- surgery is complete! He was super happy with how things went. Zero complications. Minimal blood loss.
• 1800 My person, April, who came to the hospital and stayed with me ALL. DAY.LONG insisted I go to Snack 'n Chat for dinner. We still hadn't heard when Ethan would be moved upstairs, so I made sure the desk had my number and I headed upstairs for dinner. SnC was on the same floor as PICU, so we were close for when he was moved.
• 1930 Scott and I check in with PICU. Ethan is there, but they are still getting him situated.
• 2015 We are finally taken to see our boy. 

What we walked in to post-op. He looked so much better than what we had geared up in our minds.

I think that most parents of children with Down syndrome will tell you that their child eats through sedation. For whatever reason, they tend to metabolize sedatives differently and need a bit extra in order to stay sedated. Ethan definitely falls into that category. And, when he wakes up, he doesn't do this groggy, slow-to-wake business- he springs up. Well, that's not a good plan when you're intubated. So, even though he was on a cocktail of precedex, morphine, and versed, he still woke up and fought. Due to how he is with sedation, they ordered Nimbex, which is a paralytic. Once that was on deck, he was sleeping soundly and cooperated the majority of the night. Ethan's heart rate was low and blood pressure was elevated, but it was likely due to the stress of the surgery because this morning he actually had a "softer" bp (lower). Ethan has had blood running our of his nose like a faucet since yesterday, but it does seem to be getting better. Again, they say it's expected and nothing to worry about it. His blood is being checked daily to make sure he isn't losing too much blood and so far, so good.

I slept some overnight. Being in the PICU, the nurses do EVERYTHING. I'm just here so Ethan knows I'm here. I'm so used to having to do everything, but in here they actually want me to take a step back. It's a bit of a challenge for me as I still have to "supervise". I think tonight I will sleep better. 

I posted on Facebook that the PICU attending (who actually plays soccer with Scott every week!) was quite accommodating with my request to give Ethan his Juice Plus+. Some doctors don't know what it is and then you have to shoot through hoops in order to get it approved, so I am happy that it wasn't a fight at all. 

The foley catheter and arterial line was taken out this morning around 11am. Ethan still hasn't peed. They are giving him 12 hours, which is up in an hour. If he doesn't meet the deadline, the nurse will have to do an in/out cath to empty his bladder (at least he's sedated!). 

We were able to start feeding him again, SLOWLY, around 3pm and he's getting plenty of fluids by IV. 

Advantage #36081: I can hold my son's hand without objection. 😊

I'm sure I am forgetting something, but that's the main points.

This is Ethan tonight. The swelling has begun to take over and Dr. Runyan said it will be worse tomorrow. It's strange to see my underweight boy so puffy.

We have some thanks to give!

• Dr. Runyan and his team. We have certainly been blessed with a brilliant, amazing surgeon who also happens to be a phenomenal human in general.
• My person, April, who took the time off from work to sit in a waiting room with my freak show of a personality for over 8 hours.
• Ashley Donahue for bringing me the coziest of blankets because the waiting room was the freaking arctic tundra! #wemetatkimono
• Ann Marie Bernhardt for all of her help and care and spoiling of Cora while we are here with E
• Madonna Wright with Center Grove Baptist Church for facilitating to have Mitch meet us at the hospital to pray over Ethan and for checking in to know how to pray further. 
• John and Lauri Motz, our precious pastoral team from home in CA, for taking time out of their travels to pull over and pray for all of us.
• Katie Wilmoth for breakfast and a visit that also came with a neck and scalp massage. #bestdoulaever
• Dawn Hartman and Katie for organizing a meal train
• The staff at Cora's preschool for giving her grace and also giving the extra love to her while we are away
• Bethany Balsis for an amazingly sweet Facebook post that made our hearts humble and happy.
• Bill and Heather Bauguss for always being there for us to pray, provide meals, and ya know- rip up carpet/demo a bathroom ;)
• Sara Hara for sitting on the waiting room floor to play with Ethan before he was called back to surgery and for checking in this morning.
• Sherry Fitzsimmons for taking care of my Juice Plus customers for me
• Everyone who has checked in with me to see how we are
• Everyone who has commented/shared about Ethan in order to storm the heavens with prayers for a successful surgery. Keep them coming, my friends, they are working! We are so, so appreciative!
• Our nurses. They have been nothing short of amazing. They also led me in the direction to where I could shower, so thank you! My spirit has been refreshed, most definitely. 
• Our PICU attendings and residents. Goodness, they've all be great. 

 

The above pictures were taken a week ago. This was Ethan every day; tired, exhausted, grumpy, irritable, and miserable. I really hope and pray that pictures like those will be far and few between once he's recovered.

Again, much love and thanks to everyone who has prayed for Ethan and/or been a support to us during these challenging times. It takes a village, y'all. We love you.