Wednesday, August 22, 2018

Just another day in the life of Rett Syndrome....

I woke up this morning at my usual time of 6-ish, got up and opened the house up for Tess's home health nurse to arrive at 7. When Lindsay got here  we proceeded to go about our usual routine of getting Tess to the side of her bed, one person holding her while the other washed her and put on deoderant, briefs, bra, shirt, pants, etc. Then we transferred her together to her transport wheelchair that we keep upstairs so that Tess could begin her breathing treatment regimen.

I brushed her hair and put on her favorite movie as Lindsay got out the cart of equipment. And I do mean cart. It holds Tess's nebulizer, suction, cough assist, and chest vest.

Lindsay started with the usual xopenex via nebulizer to help open up Tess's airways as I wandered off to get myself somewhat presentable to take Tess to school by 8:30. After the xopenex came the hypertonic saline, again via nebulizer, and last, the dornase via nebulizer. The dornase is a medicine that is given to kids who have cystic fibrosis. Tess does not have CF but her lungs get "gummy" and can develop mucus plugs that lead to pneumonias similar to what happens to the lungs of a child who does have CF. All of this takes about 30 minutes or so.

Next is the cough assist. It's basically a machine that forces Tess to cough in order to move the crap that sits in her lungs by throwing pressured air down into her lungs then forcefully sucking it quickly back out. It's not pretty and it's not fun and Tess hates it. But man, that particular piece of equipment has quite literally been a lifesaver for Tessie. Then she gets 2 puffs from her flovent inhaler.

She gets this every day, twice a day when she is well. We do it 4 times per day when she is sick.

While all this is going on, Lindsay (or myself if I don't have a nurse on any given day) will mix up Tess's anti-seizure meds. 14 pills gets crushed and pushed into her gtube. FOURTEEN. And that's just the morning's dose. She'll get another 6.5 at 2pm and still another 16 at bed time. That's 36.5 anti-seizure pills per day.

Her seizures are not controlled despite all of that.

After her morning breathing treatment today, just as we were finishing up and getting ready to start the process of getting her on the chair lift and then into her real wheelchair that stays downstairs, Tess went into a seizure.

Lindsay called to me and we began timing. This was a big one. Her breathing was affected, her heart rate shot up to 160 beats per minute and she was drenched in sweat. We gave rescue meds at 4 minutes and again at 12. She still continued to seize. She finally stopped at about the 20 minute mark.

Needless to say, Tess spent the rest of the day in bed while I continued to hear heart alarms as she twitched from the after affects of all of those meds that had been pushed into her little body.

Tonight her temperature is slightly elevated and her heart rate is still a little too high for her so now  wait to see if it's all after affects of this morning's seizure or was the seizure actually a sign that something worse is brewing. Time will tell.

I'll also get to spend the rest of the night worrying about SUDEP.

Just take a second to imagine that. And then imagine it happening on a regular basis.

This is one small part of what goes on in the day of the life someone with Rett Syndrome.

This is just part of the reason I am fundraising for Rett Syndrome. No kid should have to go through this, especially considering how close we are to finding a cure.  Please consider donating to Tess's Team Page.  (hover over Tess's Team and it will link you to her page or you can copy and paste the link below into your search bar).  We are grateful for ANY amount you can give. And please consider sharing either this blog post or the link to Tess's Team Page on your own social media accounts! Thank you! :)


  1. Hold on, Sweet Tessie! We are praying for a cure and will be donating to your walk a thon. ❤️❤️
    Love you, Auntie

  2. That picture of Tessie with her round red glasses is totally adorable. Sweet girl, hold strong- and Mom and helpers too.