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.

Turn of event

Kaelyn having done ok since her admission, things suddenly took a turn in the hospital

Her fever spiked. It’s not high but it’s a constant low grade fever.

Her secretions and mucus became more in volume. Together with bleeding in her nose and throat (probably trauma from suctioning), all these just stuck together, making things unmanageable.

We were literally fishing for mucus plugs.

We bagged her few times.

We were recommended to intubated her. We went ahead with that to make her breathing and secretions more manageable.

Being intubated, she is now in ICU. Fever is gone.

We took the chance to do a bronchoscope procedure, clearing a plug in the airways Where we wouldn’t be able to reach it.

Her secretions production still high gear. We have still been able to keep her lungs clear, a plus point.
We are awaiting for better, clearer conditions in her airway to extubate her.

Gosh this feels like a rocket launch.

Fingers crossed

Not a start to the year we want

I am at the hospital with Kaelyn. We have been here for the past nights. 

Not a start we want for the year, month, week, day or hour as a matter of fact.

We arrived into the hospital, after bagging her, in an ambulance.

We were doing music therapy and she was humming along. Then suddenly she turned quiet, gave non-responsive stare and her sats just plummets. 

We stablised her after a while but the ambulance was well on its way.

For the past few days, she has fever that goes up and down for the past few days. Her inside of her nose is also swollen and bloody after numerous suctioning to clear her airways.

Her condition is stable so far.

I sit here writing this and having second thoughts, such as we probably shouldn't have needed to leave home if we handled the situation better. 

We should be more confident in our knowledge of K's condition and whatever life saving hacks for K.

After all, if possible, home is the best for resting and recuperating.

The first night, we had a boy opposite us who couldn't stop crying. No rest for that night.

The hourly checks for temperature and blood pressure in the day and night just irritates K out of her rest.

The aircon went bonkers as well, rendering the ward as cold as a data centre server room temperature. This also had some effect on K's sleep.

But on 3rd thoughts, we are kiasee :P Scenarios like bagging her halfway and we run out of oxygen and then not sure how to sustain her in the last minute dash to the hospital.

After the incident and admission, I had a chance to talk to a doctor who knows K and her condition. We talked and walked thru about what had happened and he gave some information on what usually will happen during sickness and the effect it has on kids with compromised breathing.

We take this as a lesson that we need to MENTALLY rehearse (we do not want an actual situation again ever!) well to handle well such emergencies, that will take place so often on kids with Spinal Muscular Atrophy.