Out of hospital

Kaelyn has had her endotracheal tube (ETT) removed, discharged from the ICU and has made it home.

3 weeks ago we admitted her into the hospital We have had difficulties managing her secretion and mucus while in the High dependency ward after almost a week and had to bring her to the ICU, put in the ETT.

While on the ETT, it has been easier for the medical staff to manage the secretions. 

We had the ETT removed last Thursday. She sustained well on her own going back to the nasal mask.
She is back home to her routine of trying hard to refuse naps and sleep. 

She seem to have grown an inch when put on her mattress for scale. 

She still seem fragile.

But her voice is gradually coming back and getting louder, and still has her playful spirit.

She tried making funny noises, found it amusing and kept making it, until her secretion got caught up and had to have a slight suction to clear her throat. After that, back to making those noises.
Her mucus in her nose is still never ending, although manageable through our suctioning.

She still has some thick old gunk in her nose being suctioned out.

I did it for her nose again last night and drew some fresh blood. I stopped doing for her nose. I didn’t want to traumatize her nose anymore. Although I would definitely have to try to do it some time next day. 

Suctioning is such necessary evil. And she’s such a trooper, just nodding if I ask her if it’s comfortable, and shaking her head if I asked if it was painful.

We are thankful she sustained well after coming off the ETT. There would be painful decisions for everyone, in the short term or long term, to make if she cannot come off the ETT.

This is Spinal Muscular Atrophy.