Exercise station

We have a stainless steel frame. It fits just nice over her mattress during the day time. For now, we use it to hang slings for her legs. It enables her to move her legs more as it is supported against gravity and friction.

I try to lie beside her and do scissors with my leg, hopefully she tries to imitate me. It is good exercise for me too. She does have little little movements. Although limited, It's good for her to exercise whatever muscles she still has under control.

The new iPad Mini

Mummy got Kaelyn an iPad Mini while in the previous hospitalisation. It was meant to be a Christmas present for her.

Her favorite videos are Tom and Jerry cartoons, Barney and most of all the alphabetic songs from pink fong.

Kaelyn's equipment

Ever since her discharge from her last admission into KKH, we have to go home with a number of equipment.

1. Pulse Oximeter
The Nellcor N-600x. This is to monitor her Oxygen(O2) saturation level (O2 sats) level and her pulse rate. It is also good for getting a warning that she is waking up from her sleep. Normally, her O2 sats should be greater than 95%. Her pulse rate at home and in hospital differs a bit. It is higher at home. So we are trying to see that she settles down at home and maybe establish a baseline for her pulse rate.

2. Bipap Machine & humidifier
The Bi Level Positive airway pressure machine continuously pumps air into her airway to ensure she gets enough air to breathe. The humidifier works to ensure the air entering her airway is not too dry.

3. Kangaroo ePump
She had her inpedence test done in her last stay in KKH. The results were a significant reflux. So for now, feeding her is a round-the-clock affair. This is to reduce the pressure of one single bolus milk feed on her digestive system, and minimising the reflux issue for now.

4. Suction machine
She has 2 of this. One a "desktop" version, or rather one that is stationary and has no backup battery. The other is the DeVilbliss portable suction machine, which we promptly got as a backup after the incident where the suction machine broke down. It is also for whenever we leave house. We can help clear Kaelyn's airway as and when we need if we are out.

Kaelyn with no ventilator mask and nasal tube

Kaelyn with no ventilator mask and nasal tube, a photo by chan.kaiwen on Flickr.

Just found another picture of Kaelyn. This one is probably taken during her weekly nasal tube change.

Off with the mask!

Each morning when Kaelyn takes a bath, we will remove her mask, take the oximeter sensor off her and take off her continuous feed as well.

This is 1 short moment for the day where she will not be attached to any machine. She is pretty glad not to be attached to any machine. And we do feel her gladness for this short while of freedom for her.

The temporary disconnection from the equipments, especially the oximeter, also does makes us feel insecure as we do not have the reading from the oximeter to indicate if her respiration is fine. We have to rely on Kaelyn's facial expression and cues to judge if she is fine.

Equipment failure on the day of discharge

On the day Kaelyn was discharged and coming home, it was supposed to be a non-event, but I think this deserves a post on itself.

Before leaving the hospital, she had suction done on her airway by the nurses. She was transported into our vehicle with all our equipment and belongings, and was on our way home. it was nearing rush hour and traffic was not quite fast. While driving, I secretly prayed that the batteries of the equipment will last the trip home and not give up while stuck in the jam.

Kaelyn's 1st involuntary admission

There was going to be an update about how Kaelyn seems to be getting choked up on her own secretions or food. However she was admitted to the hospital before that post was finished.

On the 27th November afternoon, grandma found Kaelyn breathing rapidly. She was promptly sent to the PD nearby for a quick check. At first they were insistent that Kaelyn had to queue up to see the doctor. But after assessing her condition, I am glad they were able to make concessions for her, allowing her to jump queue to have a quick look. Mummy skipped her massage session. I rushed back to have a look.