Just some bad days

Sitting down, and starting to type out this entry after a bumpy evening. My helper is putting Kaelyn to sleep earlier than usual.

Kaelyn heart rate was tachy and wasn’t holding her spO2 too well this evening.

We didn’t finish her sets of cough assist. We gave her a break after checking that she sounds clear enough.

She just wasn’t holding it too well today.

Seems like she’s like this when she doesn’t get enough rest.


Last Saturday was more stressful.

Same thing. Tachycardia and spO2 didnt hold up well. She even seem to aspirate her feed.

Aspiration of her feed is bad as it could go into her lungs and lungs could collapsed.

SpO2 dropped well into the 50s% (healthy is 95% and above)

We standby to bag her on Saturday. But we didn’t have to. Good not to stress her body further.

After her own record ICU stay, she’s really more fragile.

Her fingers weaker.

Ankles stiffer.

Her smile is fading.

Her voice lacking her usual strength.

The combination of the progression of her disease, splints preventing her hand movement, IV lines preventing her wearing of her AFOs just takes the poll on her.

I go to bed thinking when she recuperates enough, maybe she can wave her hands, give me a bigger smile and shout so loud from the hall, I can hear from the corridors when I come back from work.

Just a weak maybe.

She’s in good spirits most times, but it just takes lesser to set her off now.

if she starts to not have quality naps and night sleep, She is literally alarming. Her heart rate goes up to 180–190 like a sports car going into the highway and her spO2 goes below the healthy level and stays there long enough for you to worry.

It’s like screw it, I am tired breathing normally. Take 5. Breath harder in awhile. Let them go fix me a dose of O2 therapy for me. Chop chop.

We scramble around, put her into her favorite position, suctioning what we could suction, supplement whatever appropriate dose of O2 she needs.

Amidst the frantic action going on, We tell her It’s ok baby. Rest and relax, but just remember to breath in breath out.

As K’s previous therapist told us, We are going to have just some bad day now and then (somewhere along that line)

Just some bad days.