Monday, August 20, 2018

A Trip to the PICU

This weekend was not the weekend that I expected.

I imagine a lot of us are feeling that way about this entire week, this entire month maybe. 

I keep thinking that I have to say something about all of that, as soon as I catch my breath from all of this. If I ever catch my breath from all of this. 

I'm hoping to catch my breath from all of this "real life stuff" sometime next week when school starts and suddenly my house is very quiet for at least three hours a day, when five people of varying small sizes are at school. 

But between all this gene stuff, which has thrown me off more than I can say, and a weekend spent partially in the pediatric intensive care unit, I have very few words left for anything beyond my small sphere. 

Tessie has decided that breathing all that much is not all the important to her and so Paul and I spent a great deal of the weekend encouraging her to do more breathing, or to breath more deeply, or to just wake up.

She is not a fan of waking when she's asleep, which even the intensive care doctors discovered when a blood test did not wake her and prying her eyes open and shining lights in them did not wake her.

This toddler can sleep through just about anything.

Oxygen desats into the 70s (and later below 70) is what landed her in the PICU for observation. It was good that we went though because I was able to ask the team there during rounds lots and lots of questions about exactly how to handle it when it happens again.

And when it happened again, happened to be the next day, when she turned blue from that 69% desat ( I did talk to her doctor and he did talk to the PICU and they decided that we'd handled it and that she didn't need to come back in...although I was certainly ready to pile her back into the care when I saw she'd gone below 70%).

And of course t means going back to pulmonology.

I called genetics this morning and got the name of the pulmonologist that is the best with genetic conditions, and her geneticist assured me that now that we have her genetic results they're going to treat her very differently at her appointments than they did prior to the test results coming in, when everything was sort of blown off and excused as "prematurity" and something she'd outgrow.

Whether or that means that the threat to the monitor is gone forever remains to be seen.

I remain skeptical after everything that's already happened.

And because I haven't shared this here yet, here are the two videos where I talk about our school experiences and choices and how we ended up where we ended up.

My big conclusion is that every family has to figure out what the best fit is for their individual children. And that isn't always easy.

The second one was a little bit hard to make, because the experience wasn't exactly easy (and when I made it I realized that I still feel a teensy bit angry about everything that went down).

But I think it's turned out alright. More than alright.

It just took a little bit of time to figure out where we belonged.

And that is that.

I'm trying to get back into the swing of things and I should have more time in the very near future.

Things just really need to calm down around here. And if that toddler could just keep breathing and stop desatting that would be a big help!


  1. First off, that is so scary. I'm glad she's ok and that they're still working on figuring it all out.

    School... I am so sorry you went through that with the private school. I'm sorry she did. Esp the way they tried to justify the boys behavior just upsets me so much.

    I agree with you on choosing what's best for ya'll. Esp with special needs. I'm glad your public schools are good. Ours have issues lol. Its really hard to gauge what's going to be that fit sometimes. I swore I'd never homeschool and now here we are. Now I'm looking at public because Jason wants kalila in next year and just dreading it. There's decent high schools here, but middle... and that's not touching what to do for zj.

  2. How scary. I wish I was close enough to hug you. And give you a night every couple weeks where you could sleep.

    And 100% agree with where you end up educationally is not always where you end up. I, as a Catholic school educated child and a SPED teacher, am horrified by how the schools treated. I understand they may not have the resources...and saying that is fine. Implying that a child would be violent just because they were autistic is bad enough. But condoning bullying and expecting Tess to be a "virtue lesson" is objectifying and blaming hitting on "he does it because he likes you" is behavior that leads to abusive men thinking its ok. I don't even have words for how awful that is.

    Having a child who is "not autistic but not exactly typical" has made us change our schooling plans as well. We bought our house to have our son in the best school district in the state. And we now homeschool. Our sons complete list of diagnoses is Severe Complex Migraine disorder, GERD, Gastroparisis, and severe ADHD. The OT who evaluated him says he has sensory processing issues, but only when he has an aura or migraine. Her exact words were "Its like he straddles a line between ADHD and Autism, and that line is pain". He can't take meds for his ADHD...they all cause his migraines to spike. He managed with supports through elementary, but the louder and more stressful middle school did him in. Its frustrating when you try to give your kids the best education...and what you thought would work doesnt work at all.


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