Yummy!

Jon has had his tracheostomy for a week now, and I think the verdict is in. It is AWESOME!! He can breathe with ease, which is giving him some energy again. He can speak with better air flow than before, so he sounds even better. And perhaps most importantly... HE CAN EAT WHATEVER HE WANTS! Woohoo!!!! Bring on the steak! (OK, so perhaps the breathing is most important. Whatever.) 

Jon went down to X-ray this afternoon so they could make sure he was swallowing safely. He had to eat different consistencies of food with barium (which was completely disgusting), so it is a really good thing he can eat what he wants now. If he had to do that and the reward was never eating again. Not cool. I got to administer the torture by feeding him, hence the awesome 101 Dalmatians lead vest I'm wearing.

Jon did have a very minor respiratory event last night, but it will likely mean staying in the ICU for an extra day. Hopefully he'll be home on Thursday.

In X-ray, getting ready for the barium swallow test.

A post I was hoping not to write for a while

Well it has been a doosey of a week. (Doosie? Doosy?) Last Thursday and Friday Jon was having a bit more trouble breathing than normal. He needed the big mask you see in this photo in order to feel comfortable, and even then it wasn't perfect.

Jon's last masked selfie! Taken this morning.

Normally he uses the nasal pillow you see in this photo. (My friend Debbie thinks this outfit makes his nose look big.) This hasn't been a bad deal. Not too intrusive and he could still talk and eat. 

Looking good in his fancy candy cane jammies.

Before his gallbladder (hear after referred to as that damn gallbladder) decided to go wonky in August, he looked like this. (Although slightly less dopey. This is a picture from the ER when he was getting his kidney stones taken care of.) So handsome!

Blissfully medicated while passing a kidney stone.

That damn gallbladder probably set Jon back at least 6 months. The progression of ALS is relatively constant...it does't really speed up or slow down. It is just relentless. However, when other trauma to the body happens, the ALS trajectory dives at the same time. Even though he is back to his previous progression, he just couldn't recover to where he was before that damn gallbladder went bad.

Which brings us to today. It turns out that Jon did indeed have pneumonia last week. He simply doesn't have the diaphragm strength to cough well and get gunk out of his lungs. So there it sat... in a nice, warm, moist (eeeewwww) environment just begging to get infected and become pneumonia. And even though they are clearing up the pneumonia, he still doesn't have the strength to clear his lungs.

So today Jon will be having a tracheostomy placed (a breathing tube in his throat for a ventilator). I'm not gonna lie... the last couple of days have been tough. Sunday I cried myself into a ridiculous headache. (Thank you, Becca, for the ibuprofen and chocolate...cleared it right up. As an aside, I find the best friendships are built on a solid foundation of chocolate.) 

But here we are. We knew this day was coming. Jon does have ALS, after all. And he made the decision months ago that a tracheostomy is the right choice for him (and I completely agree). We had hoped this wasn't going to happen for a long time, but we don't always get what we want. And that's OK.

While this is an emotional transition for us, I believe it will be a great physical change for Jon. He won't have to deal with all the stuff on his face, and we'll be able to suction the gunk out of his lungs. The downsides, of course, are that talking and eating will be difficult to impossible. But again, the ALS had already largely taken those things.

Our kids are thrilled. They're just excited for dad to look like Frankenstein. Just in time for Halloween!

More on Happiness

My sister-in-law, Julie shared this story with me about her son Danny. I just loved it and asked if I could share. 

So last night I was at Faith Formation with Danny and the speaker was talking about angels, really knowing God, and true joy and happiness.  Being happy all the time regardless of things (money, a nice home, nice car, fancy clothes, etc.).  Then she asked if anyone new of anybody who was "truly happy all the time".

Danny's hand was the first one up so of course she called on him.  His answer was:

"My Uncle Jon.  He is always happy and in a good mood.  He has ALS and he's really sick but he is still always happy and smiles!".

Then she asked him why he thinks he is so happy when he is so sick.  His answer was:

"Probably because he is always with his family and he goes to church all the time!".

WAY TO BE THE LIGHT JON!