98%

Guess who's successfully being capped right now and is maintaining his O2 levels at 96-98%...CHRISTIAN!

We downsized the trach when we finally got the right size in (3.5, he was at a 4.0). And I have to tell you, his breathing with the valve, his breathing in general, has been so much less work for him. He's never really had a problem with breathing but when he'd get stressed or in certain positions, sometimes pressure would build up and he wasn't comfortable breathing. So capping didn't go all that great when we first started. Basically this is because the trach took up almost his entire airway. It's like a straw. And when you "cap" that straw, all you have left to breath is the room around that straw. So, of course, he had a hard time, initially.

Well, we've since downsized the trach so there is more room around that straw for him to utilize his airway. He is doing great! In fact he's so relaxed he fell asleep in his swing....capped! Breathing 100% on his own! And his sats are stable! "Sats" is lingo for oxygen saturation and we also measure heart rate along with it to make sure everything is kosher. A little machine called a pulse ox machine does this for us by taking his pulse on his toe. Just thought I'd give a little explanation to the civilians. I would never have understood this paragraph a year ago!

We had a very busy week! We had some type of therapy every day, sometimes twice. We've also been trying this thing they call a "schedule." It's really essential, honestly. I've also more strictly scheduled Christian's feedings and shrunk them to half a feed at half an hour at a time. Of course, I have to do this more times a day. BUT, it seems to be working...kind of. I'm able to get more into him. He still throws up, but not after every feed and when he throws up it's minimal because he didn't have as much food. So I don't feel like I'm swimming in vomit. It's working for now.

Another part of the schedule and eating is that he has to have his last feed of the day at 8PM so he can do hyperbarics with Daddy at 9PM, which lasts until 10PM. Then I only have an hour with him. My point is that between all the appointments, therapies, naps, feedings, and scheduling, I don't feel like we had too much Mommy and Christian time. So yesterday I cancelled his 8AM physical therapy (due to scheduling conflicts, as well, and to tell you the truth, I don't even think Christian likes the PT). I gave him the exact same thing she would have and we just hung out, just the two of us.

And, shhhhh, don't tell his speech therapist but I gave him some orange. Not like a big chunk into his mouth or anything! I just held it up to his lips and let him suck on it. He responded a little by sucking and swallowing and his little tongue came out to "taste." This is good!

More adventures in Early Intervention...

So my "worker" calls me last week and says I need scripts from Christian's pediatrician for therapy. The ped sent over scripts for 3-5 days a week for PT, OT, and speech and the EI lady already has an assessment from OT that states a need for 3-5 days a week.

She calls me yesterday...

"Yeah...uh...I thought we agreed on 1 day a week for each therapy." - EI lady

"NO, you told me you could only provide 1 day a week for therapy and that was the only option you gave me." - Mama Bear.

"Well, your doctor sent over a script for 3-5 days and that's not what we agreed upon. I need him to rewrite the script for 1 day a week." - EI lady who's pissing me off now.

"I just want to make sure you're not trying to give my son as little therapy as possible." - Mama Bear, starting to get feisty.

"We just need it to say 1 day a week so we can start the therapy at home. Once the therapies are started and he's been evaluated by the therapists, they will evaluate whether he needs more or less." - EI lady starting to sound fishy.

When all is said and done it's not worth the fight for me because I've said it before and I'll say it again - whatever she doesn't provide, he will get elsewhere. That's the bottom line. But this seems shifty to me. Christian's ped and the OT assessment say he NEEDS 3-5 days a week of PT, OT, and Speech. So she wants to call the doctor and have him change the script, thus changing his "need?" Manny had a good point saying you wouldn't do that with a medication. You give what they need! And she wants to have him reassessed by one of her peeps so that they can put on his evaluation 1 day a week per therapy.

This all smells fishy. I'm calling her and may even talk to her supervisor because this just doesn't seem how a government funded agency should operate. I mean aren't you kind of lying if you restate a script to suit the agenda of someone else?

Monday also starts more hyperbarics! That's two sessions a day - one in the hard chamber and one in the soft! So next week will be cra-za-zy.

And Christian's oxygen saturation is still at 98%...capped.