Thursday, November 27, 2014

365 days hospital stay free. 0 days free

K has been doing well in the period leading into and after the cruise, until last midnight.

K vomited around twice.

No fever. No cough or cold. She just threw up after her end of a feed and shortly after her medicine and flush for the evening.

It was almost time for bed time for all when my helper shouted for us. She noticed liquid starting to spew out from her mouth. Seconds later, her spo2 started to descend.

We stabilized her spo2 with suctioning and a blast of O2. Her heart rate went up and stayed there.

Shortly after she threw up again. Again, we stabilized her.

Given the recurrence in such short while, we were worried about aspiration into her lungs. We decided to bring her into KKH, have a look at her x-rays and a check while she is doing ok, instead of having to rush out there should she deteriorate.

Although K's been in and out of the hospital a few times. She just gets agitated when she  sees the people in nurse or doctor gown approach or touch her.

She got so agitated her spo2 dropped enough for the medical staff to bag her.

She is stable, but at a higher resting heart rate and Bipap settings.

Hopefully she will settle soon back to her baseline, or close enough to get her out of her ASAP.

She just has to make a stay in hospital an anniversary thing.

We have been admitted last year on the same date, and probably the year before last.

Tuesday, November 18, 2014

Gold class seats

After being down for a few weeks, K has been recuperating and is getting physically stronger.

Since she has some of her strength back, we started to put her up in her seat to 45-60deg and her head looking straight ahead. 

Her usual head position is to the side to allow her saliva/secretion to easily flow out. If her head is straight, she has to put in more effort to clear her secretion.

We have her up looking out of the window and ask her to wave hi to the neighbors in the opposite block. We have her sit up to watch her shows on her tablet.

And she really enjoys it even though she has to put in more effort to stay in that position.

She refuses to come down when we get her to come down. 

I call this her Gold Class movie seat. It's reclinable and has a leg rest that looks pretty comfortable for one to enjoy her movie.

This is Gold Class version 2, with a nicer tablet holder. We would also put her arms on slings to let her move her arms on her own. (This angle doesn't look like she is too comfortable. She is ok)

Yes I think she probably needs better arm slings.

This lounger, together with her mattress is very useful. The comfi mattress provides a ventilated and comfortable padding on the lounger. The ikea lounger is really easy for us to put her back down flat promptly in the event she handle her sitting position or needs other attention.

The physio sitters provide really good support for her. Only problem the loaner we have fits her really snugly. Getting her out requires more effort (or we could try the next size?) to dig under her bottoms to lift her out, and at the same time ensure her tubes don't catch on any corners or hooks

Clumsy dad is catchy (Geddit? No? Never mind:( )

Only problem is that she is growing up. The mattress is running out of "runway" for her length and her arm span has exceeded the width of the mattress. Need to think of a solution for our use case at home before clumsy dad accidentally knocks her off the lounger *gasp*