I just wanted to share the latest update on our little superhero from his mom. As some of you already know, he had surgery last week, and it was a pretty big one for him. Here is the update from Mama Losh.
"As referenced in this post about the ENT visit, Losh had surgery this week.
It was coincidental that the morning of surgery he was watching a cartoon where the main character went to the doctor. This character was scared and the show was about making them comfortable with visiting the doctor. Losh just shook his head and waved his hand in a “that’s ridiculous” kind of motion and told me he wasn’t scared. And he was right! This brave little boy was not scared of going to the doctor.. He was somewhat shocked that he needed surgery, but not scared.
So, here he is on the way to the doctor.. smiles as usual.
Inside the triage room, visiting with some of his friends.. Out of all of the nurses that recognize him and know him as a frequent flyer, I wish surgery wasn’t one.
All dressed and waiting on the doctors to take him back.. He still wasn’t scared.
I was a big ball of nerves. This was his twenty something surgery (Ive lost count) and he has done well with most of them. He has only had major issues with 2 of them.. Both of those times I was alone and both of those times he coded.. I was alone with him again this day and terrified out of my mind! I thank God that he did well though…
And hes done!
Poor guy ended up having a lot done. The doctor told me inside the consult room that out of all of the surgeries he has ever had that this one was going to be the worst. While back there, they did:
Tonsilectomy (removed his tonsils)
Uvulectomy (removed his uvula; the dangling bit in the back of the throat)
MLB (Scoped his airway and removed scar tissue from previous surgery)
Turbinate Trimming (inside his nose to make the airway bigger)
Ear exam (Making sure his tubes were ok)
The good news is that the doctor thinks nearly all of his airway issues are fixed.. The bad news is that there are some slight airway issues remaining that cannot ever be fixed. As he gets bigger and stronger it may become better, so all hope is not lost. The doctor believes he will be getting decannulated in the Spring after another sleep study. He is unsure if he will require CPAP, but thinks that he will not.
He was having trouble keeping his sats up and was intermittently on oxygen, but as the night wore on his sats increased.
He wanted to eat so bad, but it was just too painful to swallow. Thankfully the doctors took some steps to try to make his pain less (pillar closure being one), and had him on some pain relief medication.
He fell asleep holding onto the french fry.
The next morning rolled around and he was ready to go home, though the doctors disagreed. I had a little debate with the resident doctors regarding that though.. They didn’t want to send him home until he was eating and drinking some by mouth (even though he has a button). I told them if they were waiting for that, then they don’t realize how stubborn he is. We would have been there for days. Thankfully we were able to go home and having a button and trach is making his recovery easier than what most kids who have these operations go through.
Upon getting home he got all of his tube feeding supplies ready and had me feed him, and then he raided the fridge, found a Burger King kids meal, and heated it in the microwave (didn’t eat it tho), but he really wanted to. This kid loves food, so not being able to eat is tough for him.
He is glad to be home and he is doing well with recovery so far. Hes been resting a lot, and asking for pain medication like clock work. I just pray that this is the step needed to get him trach and machine free!
He's recovering well, but is still in pain. Poor little buddy. :( Thanks to everyone who has been keeping him in your thoughts and prayers over the last week, and for those who have been praying for his Unk 'Ney who is facing his own fight against serious illness right now. The family is so grateful to Team Losh!