Thursday, April 28, 2016

The Special Needs life, Game of Thrones style...

For years my dad has tried to get me to watch The Game of Thrones and I just didn't think it was something I'd enjoy. It sounded too intense, too violent, too everything I tend to dislike in my TV viewing. Then Blake and Ellie joined the bandwagon and my interest peaked a little. They both loved it but still, I was hesitant. Finally, when the excitement for the new season on pretty much every social media platform, as well as within my own family hit a fever pitch, I caved.

But as Frank Sinatra sang, "I did it my way."

I read the books first.

You see, anyone who knows me knows I am a bookaholic. Cannot get enough books. Ever. I even bought a shirt that reads, and I quote,

"My Patronus is a bookworm."

oh yeah, I totally own this most awesome shirt.

If you can't place where the word Patronus comes from, here's a hint, start reading Harry Potter, stat.

But I digress.

I LOVE this series. L. O. V. E. it. The word obsessed comes to mind.

So the other night as I was reading the report of Tess's initial trial with an eye gaze talking device after a most successful second trip to Boston for Tess to work with it again at the Augmentative and alternative communication (AAC) clinic, my mind flashed back to the report that the Maine AAC "guru" had sent us after he had evaluated her for the same program last October. Let's just say that his report was less than enthusiastic about her cognitive abilities and overall level of awareness (a totally opposite report than what I was reading from the Boston clinic-yet another reason we go to Boston instead of staying in-State-not to mention that it didn't jive at all with the smart kid that I know),  and I immediately thought of a quote from my new fave series, The Game of Thrones, which then led me to placing other famous/infamous GoT quotes with other situations I tend to find myself in within this special needs journey.

Here's my special needs life summed up in Game of Thrones quotes:

What I want to tell the AAC "guru" from Maine:

What I think after IEP meetings:

My reaction when the school fails to follow thru on IEP promises:

How I feel when other kids hit big milestones (walking, talking, sports, school plays) that Tess won't:

When I'm trying to make myself be brave when Tess is sick or having seizures:

And again, oftentimes a daily struggle of bravery and faith vs. fear:

How I feel when making major decisions for Tess:

Any time the mama bear in me has to come out:

How I feel when I fire someone from Tess's "team".

And lastly, because we live where we live and I dread the rough ferry weather. My thoughts at the end of every September:

And there you have it. My special needs life summed up in Game of Thrones memes. I would apologize to those of you who are reading this that aren't at all familiar with the show except I'm not sorry. I just love it too much. And I did sort of warn you.

Obsessed. Remember? 

Saturday, April 9, 2016

Catching up...

Hold crap on a cracker! It's been three months since I've written a blog post!

I guess time flies and all that.

Let's see...when I last left you way back in January, Tess was having difficulty at night with her breathing as well has having an increase in seizure activity.

Three months later and we're in the same exact place except things are rapidly escalating. And bonus, getting any rest at night, It's not in the cards and hasn't been for a while. Toodle Bug's alarms are literally screaming at least twice an hour every single night. Sometimes it's her oxygen alarm, sometimes her heart rate alarm. So it's just been a barrel of laughs here at the ol' Reidy Homestead. Because nothing makes you feel like laughing more than fear mixed with lack of sleep.

Tessie has been officially diagnosed with Severe Obstructive Sleep Apnea and it was noted on her report that she is having as many as one hundred forty three episodes per night. Yes, you read that correctly, on average, 143 times a night she has an apneic episode and her oxygen drops down to the low eighties (and yes, she has her mask oxygen and it's dumping some much needed o2 into her but it sometimes isn't enough even with that to keep her o2 levels up) , her heart rate and breathing spikes due to the amount of hard work her little body is doing to simply breathe, and the alarms scream.

Oh, and the dog whines. This past week especially. Coincidentally this past week has been the worst one yet as far as Tess's apnea goes. Ya think she's onto something? And Oreo doesn't whine with the alarms. No, it's during the silence. So, really, very very little sleep for me lately. Charlie meanwhile hears no alarms, no dog whining. Sleeping like a baby as I go into full on martyr mode with a dash of the Little Red Hen thrown in for good measure. "Fine! I'll just do it myself!".

Side note: can you guess what Charlie DOES hear? Anyone? Anyone? Bueller?

If you guessed "Joanna's bitching and moaning", DING! DING! DING! You got it!

But I digress.

One night, after my third time down to check on her and readjust her oxygen mask, I had just gotten back into bed we the alarms rang out. I did make Charlie get up then to deal with it. He came back to bed and pretty soon, more alarms. What the what?! I looked in the baby monitor and her mask was on. I just couldn't figure out why she was alarming so bad with oxygen on. Even the dog was whining. Cut to the next morning when I go in to check on Tess and see that the tubing running from the oxygen mask is hooked up to....wait for it.....NOTHING. It had fallen off the oxygen concentrator onto the floor, and in our exhaustion in the night, we'd never noticed.

Holy Morons, Batman! Yup, we're idiots. Or just really really sleep deprived. I'll let you decide.

Tess is scheduled for a bronchoscopy test in a couple of weeks to see if they can find a reason for the obstruction and hoping that it will be something a minor procedure can fix. Otherwise, more breathing equipment will be coming. Ugh.

And just for fun Tess decided to totally freak me, and a few other people completely out yesterday while she was at school.

As I was dropping off Tess in the morning, I noticed Oreo alerting. Well, Oreo alerts A LOT so I told Tess's nurse just to be a little extra vigilant and off I went. A few hours later the nurse called from school concerned that Tess was very sleepy, hard to wake up, and that Oreo just wouldn't stop alerting.

Hmmm...mildly concerning but we agreed that she would just keep an eye on Tess and call me right away if anything else happened. Not thirty minutes later the phone rang again. I picked up expecting the nurse and got the Principle requesting that I come right to school because the nurse wanted me to come check on Tess.

Naturally  I wasted no time in getting there and found them in the Principles office. The nurse looked upset and the Principe seemed quite concerned. Tess looked ok. Not great but not bad. Then they told me what had happened.

They had managed to wake Tess up and were sitting in the cafeteria during lunch and Tess went from totally awake to totally asleep in the snap of a finger. When they tried to wake her, she was hard to wake up and once awake, pretty out of it. This was also apparently what she had done a little earlier in the morning.

We agreed I'd take her home and the nurse rode in the car with me so I wouldn't have to be alone with Tess. The Principle sent someone to my house to pick up the nurse once Tess got settled. And on the way home, I got to see for myself what they had been talking about and let me tell you, allllll the bad and scary thoughts went thru my mind when I saw that. SUDEP. Cardiac issue. Some type of new Seizure. Sudden drop in blood pressure. Lack of oxygen. All of the above. I just didn't know. all I  did know was that it wasn't right. And I don't know how to explain why is felt so wrong except to say a mama knows her kid and literally has a physical response in her own body when their kid is in any kind of trouble. Needless to say, my whole body responded.

We got Tess into her bed and by this point, she seemed pretty happy again and quite pleased to have gotten to come home, lay in bed, and, gasp, even get her movie! She does crack me up even while she's in the middle of giving me a heart attack.

I spoke with her pediatrician that night and told him all of my worries about her sleep apnea, seizures, and those two weird "sleep/fainting" episodes at school. He didn't like it and wanted to see her but also understood my reluctance to bring her over only to have her totally rebound and be like nothing is wrong, doc. Just my crazy mama. Because she's been known to do that to me many a time. So we compromised and agreed I'd bring her to see him on Sunday if she had a bad weekend or any more of those weird episodes.  He also told me to call her pulmonologist on Monday to tell him how bad her sleep apnea has been and to try to push up the testing if possible or at least get her some help for her ragged nighttime breathing and not to wait two more weeks for something to help her. I did make the mistake of asking him if I should be very worried and he told me I should be "concerned". And me being me, just about shrieked at him, "That's not what I wanted from you! You were supposed to tell me I was overreacting!"

I know, he's so lucky to get me as a mom to have to deal with on a regular basis. I'm sure he just counts his lucky stars every night for that.

As usual our phone call ended with us both agreeing that Tessie was pulling a Tessie and then he laughingly said, "This is what my girlfriend likes to do. She'll go along pretty good for a while and then decide she wants to shake things up and throws a bunch of issues our way just to keep us on our toes."

Truer words were never spoken.