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Saturday, October 3, 2009


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.


Tara said...

well Collin only gets PT once a week and I do it the other days. I was telling my PT about your story and she said you are "lucky" if you get what you want. That is just how EI works in all states. and Yeah for the capping! Hope he continues and gets off of the trach!

gavman306 said...

Great news on the capping!! Good luck with the EI lady, she sounds like a trip, but I think you can handle her!! Keep it up Christian!!

Rochelle said...

AWESOME news on the capping!!!

I think that the EI lady sounds fishy, too. I say speak with a supervisor. I wouldn't ask the doctor to change the prescription because if he does, this it becomes part of he "record" that Christian only needs 1 per week - which is not what he needs. Even if it says 3 to 5 times a week, and they can only provide 1 time a week, so be it. Provide what you can but why change the script? Doesn't make sense to me and I wouldn't budge on that one. They should be able to do whatever they can - even if the script requests more. I would stand firm on that, Mama Bear.

pajrnjam said...

I have been following your blog almost since the beginning. I am so happy at Christians progress!!! My son has Autism and sensory disorders and I thought of you today when my Abilitations catalog came. I don't know if you have heard of them but they have SOOOO many things to help our little ones. What made me think of you was they have this little, portable bucket they call the barf buddy! Anyway the catalog is Abilitations (

The 'Ssippi Scoup said...

Ok so I just came across your site and not sure how but have enjoyed reading. I am in MS now but just moved from AL where I was an EI coordinator for the state. I have two degress in special ed, the first one certifies me in EI. So I'm speaking from my knowledge of all that in the state of AL. You are right...fishy. I wouldn't get the script changed. I'd leave it like it is and tell the lady you'll discuss after he's been evaluated and they've made their recommendations. How can you agree on something when he hasn't even been evaluated? Basically what that script means is the medically speaking the doctor says he is fine for OT, PT, and speech to evaluate him. AFTER the evals, then that is the time to decide how much he should get. And you are right, if he needs 3 days, that what they should give. If he needs 1 day, then that's what they should give. On the other hand, just because I know, EI doesn't have to provide a Cadilac version of services. They are only required to provide basic services and sadly you are right again, you'll have to provide anything you want over that basic on your own. However, typically speaking EI should provide enough services for you to see a difference and see him gaining skills. It's not basic in the sense that they are providing services as a token gesture, I mean that they have to provide at least the minimal for him to make progress.

Anyway, long story short, don't get the script changed. She can't make you get that changed. Like i said the script is not really determining the services anyway, only that he is medically able to participate in the activities that the therapies will require. Hope this makes sense.

Brooke said...

So- first of all GOOD for ditching the one therapy session for mommy and Christian time!! Awesome!! That sounds like it was MUCH needed for both of you!!

Second.....WHY would it matter what the prescription said?? I don't get it. So what if the script says for 100 times a week.....seems if all they would approve was one time a week then that's all they would approve no matter what the script says.....weird....fishy for sure!!! I agree with PP who says don't get script changed. You KNOW he's going to get what he needs no matter what because you will make sure of that.....but don't be bullied by this company.....I don't think I like this lady.....

YAY for the hyperbaric today!! How exciting to start that therapy again....that's great!!! I hope the rest of your week goes great for everyone!!!!

Oh....HOORAY for such great capping and sats!! GO CHRISTIAN!!!! What a accomplishment!!!!!!!

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