Hello, son,
This morning, at 2 AM, your caregiver woke me up a bit panicked. Your NIV was making an alarm sound. In reality, it was just the fluctuating electrical voltage.
I went back to sleep, and a little later, I heard you crying.
When I arrived, you scared me, my son. I’ve never heard you cry so hard.
I picked you up, and you calmed down immediately.
But as soon as I moved an inch to grab your pacifier, you started crying even harder.
You’ve never screamed so loudly.
I tried to put you on the bed to examine you. It was even worse.
And then finally, on a second attempt, you rolled onto your stomach, out of breath. I was afraid you wouldn’t be able to breathe, and you remained motionless for about ten minutes, eyes wide open, staring at the wall without a sound and extremely breathless. I put the oxygen back to 2L/min to let you recover.
I didn’t understand what happened. But that scream brought back awful memories from the hospital.
My therapist gave me techniques to avoid this kind of association, but this morning it was intense!
It’s crazy how a sound can bring everything back all at once.
Fortunately, you’re doing better now.
Otherwise, we didn’t see much of each other yesterday.
Your mom and I were busy. Like every Monday morning, we did our weekly recap in front of your schedule board.
Everything is meticulously adjusted according to specialist visits, medication requirements, etc., etc..
Then we each went our separate ways to carry out our tasks while you stayed with your caregiver.
We also received authorization from the NIV-specialized physiotherapist to let you gradually start NIV for one minute to avoid waking you up.
That already made a difference last night, and I hope it helps you sleep better.
We also decided to reorganize your room. We had placed the NIV machine near your bed, hoping you would quickly adapt to it and be able to sleep with it. But life isn’t Instagram. In the end, everything is still done manually, with the mask on your nose.
And since we had to bring the armchair closer every time to put you on our laps and then use the NIV, we finally decided to put the NIV next to the armchair. No need to move anything anymore!
I think and hope this will make everyone’s life easier.
Also, very good news. The sweat test result is out.
And it confirmed that you don’t have cystic fibrosis!
I was confident but relieved nonetheless!
Your great-grandmother Jeannine sent me urgent messages yesterday because your Grandpa Christian had crashed his phone and no longer had WhatsApp.
He was furious because he lost all your photos.
Grandpa and technology don’t mix, haha.
I tried remote troubleshooting, but it was unsuccessful.
So, your godfather Bastien will have to come to the rescue today.
And finally, I wanted to thank Crica, who dedicated her time to help your mom with the creation of a great booklet for your mom’s clients. If anyone is looking for a highly competent marketing professional, honestly, go for it: https://www.instagram.com/crica.rochamacedo
See you tomorrow, my little potato!
I love you
Dad
