The Air That I Breathe...


A room with a view

Day 11 in the PICU.

It feels like I'm living in a Netflix series called The PICU.

The past few days - or episodes- have been quite a roller coaster ride. We're up and then we're down again. It's all just leading to the dramatic comeback, right? We'd lose viewers if we didn't add more excitement on the way to recovery. So Josie is keeping us glued to our screens.

Let's recap...

Sepsis and Pneumonia stole the opening act. That ER scene was Scorsese worthy, Josie. The fear in the doctors eyes. Mom's knees go weak.

Enter the Infectious Disease team. So swiftly they investigate, identify, and tackle the evil bacteria.

While Sepsis was slowly getting killed off the show, Pneumonia introduced a new antagonist named Major F*kn Breathing Problems (Maj. FBP).

**cue title music **

Maj. FBP sure did shine a light on the awful condition of Josie's lungs. Low capacity plus aspiration, they were a breeding ground for infection. I wonder how long this has been going on. It's been so hard for her to take deep breaths and I didn't know. All those times we gave her the nebulizer when she seemed to have a chest cold, just wasn't enough. 

Call in the super weapons -  BiPAP, cough assist, chest vest, the lasso. They're all coming home with us and will be a part of our regular routine. She will be better than before.

By Day 10, all seemed on the up and up.

The antibiotics have run their course. Josie is breathing on her own. Her blood gas levels came down. All her blood levels are looking great. She went from the panic platelet level of 30 to a healthy 258. Her seizures seemed to be heading in the right direction. I thought we could maybe going home in the next day or so.

We see the convertible driving towards the sunset, Josie throws off her hat and giggles.

Not so fast. Screeching sounds.

Epilepsy is such an attention stealer.

If you read the last post, you know we made an abrupt, very necessary, change in Josie's seizure meds. We hoped the new med, Zonagran, would seamlessly replace the Depakote.

It's just not that quick or easy. The Zonagram should have what it takes to do the job, but needs some time and some support to ramp up.

Josie has been having multiple seizures over the past 24 hours. Multiple is way too many.

So, "to keep the cattle in the cage" as the neurologist said, to stop the seizures from escalating, we added a new drug called Fosphenytoin to bridge the gap while Zonegran gets its groove on.

We gave the first loading dose and she still had two more seizures.

We gave a second loading dose. The PA woke me up around 4 a.m. to tell me her EEG looked good after that second dose so they’re going to continue as a “standing dose” - a temporary added ingredient to the cocktail.

She had another big seizure today. I can see her eyes and body give previews to what's about to happen. I know it's coming. 

Her level of therapeutic protection isn't there yet. The cocktail is marinating. It's almost ready. I can feel it. Like Axle says "all you need is just a little patience."

So we tweak and we watch and we pray and we wait. 

Until Next Time - on - The PICU.

Music Inspiration

"Sometimes, all I need is the air that breathe and to love you. All I need is the air that I breathe and to love you." 

The title of this blog post is an oldie, and such a goodie. It's by the Hollies, perhaps the most underrated British rock band from the 60s/70s. Those vocals, especially the Graham Nash years. 
I play this song a lot. I just love it - and here, it couldn't be more fitting. 

All I need is the air that she breathes and to love her. 

Hospital Hack

The first few days when Josie was so sick and not awake, it upset me that the doctors and nurses didn't know her. She is not this unresponsive, cold, swollen little girl with a vent and head wrap. She's the Boobsie Boo! She's vibrant and hilarious. So, I showed them videos and I said, "this is Josie." 

It helped change the energy in this room. Once you experience that laughter, it's hard not love her. Spoken like a true mom, I guess. It made me feel that they are more connected to her or maybe it made me feel more connected to them.

Breathing on her own.

Before Sunrise from room 913. 


For more information about the work to find a cure for every child in the world with FOXG1 syndrome, please visit our website www.FOXG1Research.org 

And to help support us, please go to www.foxg1research.org/donate  

Thank you!


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