Super Rare Surgery Complication

It appears that I have failed to update this platform since we were released from the hospital. Oops! We were released from the hospital the following day after my last post here. I guess the updates post-admission were fairly small and not worth using the space here. I don't know. Anywho...

It's been 89 days since Ethan's major surgery to advance his jaw in hopes to create enough airway space for him when he sleeps because of his severe sleep apnea. We've now been home for 2.5 months and the #1 question we get is: Did the surgery help?

The answer is semi-complicated, but the short answer is, YES, yes it has helped some. We can tell that he's a little bit more rested and his dark circles are not as bad as before; he's also not falling asleep the second he gets in the car anymore. The longer answer is: we aren't sure if it helped enough. His pulse ox still has him dropping into the mid-high 80's every night and he is still super restless. He might be getting longer stretches of sleep, but still not fully restful. We aren't able to have another sleep study done for 3.5 more months still.

Onto the super rare complication, because anything involving Ethan wouldn't be complete without something super rare or complicated attached to it. *all the eye rolls and sad faces*

About a week after we were released home, Ethan's mouth really started to smell. I mean, we are talking DEATH BREATH. It was awful; I could even smell it in my nostrils after I went to bed and needed to place Mentholatum in my nose to not smell it anymore (a trick I learned from visiting the slums in Kenya).

Ethan is not the most compliant when it comes to oral health, but Scott and I tackled getting into his mouth to see what was going on. As I brushed gently, I pulled up on his upper lip so I could see his upper teeth. Then, I saw it. "Well, that's the problem", I told Scott. Ethan's gums in the upper right quadrant were WHITE. I didn't feel it was thrush or some funky gingivitis that you read about when searching Google for "white gums". Something was obviously wrong so I wrote to our surgeon, pediatrician, and dentist.

We saw our pediatrician the next day and he confirmed it wasn't thrush. Our dentist had no idea what was happening. Our surgeon wanted to see him.

Once our surgeon was able to see Ethan's gums, he confirmed that the gum tissue was necrotic. That's DEAD for all of you non-medically termed people. So, he did in fact have death breath.

The SUPER DUPER RARE complication from surgery was that for some unbeknownst reason Ethan lost blood supply to that quadrant of his mouth. Our surgeon had never had a patient with this issue and the oral surgeon that he consulted with has only seen in 3-4 times in his 40 years of practice. The good news was that his palate was still pink and I could still get blood if I aggressively flossed his teeth in that area. We had hope that the tissue would slough off and regenerate, but he was now at a high risk to lose all of those teeth in that upper-right quadrant.

I took Ethan for another surgical follow-up on November 28th. The odor in Ethan's mouth is still there, but not as potent as before so our surgeon took a peek and took his finger to the white surface only for it to crumble off into his (gloved) hand. We now have exposed bone and an even higher probability of losing the teeth, but we still had some hope his teeth would be ok- especially because he doesn't chew on food; he does chew on his cloth, but we have noticed that he only chews on the LEFT side.

Our surgeon mentioned that there has been great success with tissue regeneration from hyperbaric oxygen therapy  but can we all agree that there is NO WAY that Ethan is going to lay still inside of a chamber? Yeah, no.

The odor coming from his mouth was starting to get pretty strong again, so Scott and I tackled his oral care again last night. I've actually been afraid to brush his teeth out of fear that his teeth will crumble in my hand, but we had to do it.

I brushed his teeth the best I could and felt to see if any of his teeth were loose. They ALL are in that quadrant. My hope is lost; Ethan is going to lose a quarter of his teeth.

I'd like to say that I can focus on the perspective that Scott keeps trying to remind me of- he's here. Toothless or not, he's here. Would I rather him have teeth or be alive? I know, I know. I'm just having my moment as I think anyone in my place would.

This complication also puts him at a high risk for an oral infection which could be super dangerous.

The other rare complication was the pressure sore on Ethan's head that completely scabbed over and caused pressure alopecia. He does have some new hair growth beginning, but I doubt it will ever all grow back.

So, that's it. Ethan has a huge bald spot and it going to be missing a quarter of his teeth, but he's here and (seemingly) resting better, so there is that.

I think that we can all agree that Ethan has been through ENOUGH. He deserves a BREAK. No more. Please, no more. Lord, please, no more.