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*

BiPap Down

Just as K was settling into her routine after some downtime, our BiPap decided to stop working last week.

After the mask was removed from K for bath, it stopped working after she came back to the BiPap. It couldn't pump to the required pressure.

Rushed back home from work to have a look. No restarts could make it work again.

Called up the supplier to come have a look and bring a temporary replacement unit.

Thankfully K has a good day with her secretions. She was able to manage and hold out without her BiPap until the supplier came.

We have our ambu bag on the standby of course, but didn't have to use it this round.

Now...to look at the repair cost :(

Just a minor rough patch hopefully

What's going on lately? K has recuperated enough to sit up and play.

We still give her once a day flumecil and nebulizer. But we can probably cut that off soon.

She had a home care visit recently too. She has healthy gain in weight and height.

We updated the docs and nurse of the bad episode that happened at home. Doctor decided the episode is probably enough to warrant an X-ray of her lungs. It also has been almost a year since she undergone an X-ray.

After discussion with the gastro team, we also had her feeding hours by another 2 hours, and then another 2 hours in future when she is used to the increase of feeding per hour.

But just when we thought we rode over the hump, she has a fever just over the Sunday.

Monday she also has some rash coming out.

Suspicions were cast on chicken pox, even though she has had her vaccines and has not been in contact with anyone in remote contact with chicken pox.

Vaccinated kids still has a chance of developing chicken pox, though it may not be full blown.

So far the rash has not been spreading. This has got the doctors and nurses puzzled though as the rash came with some scratched stripes on her skin. So we are monitoring this at the moment.

*Fingers crossed* Hope this is just a minor rough patch.

Getting out of the woods

It has been 2 to 3 weeks since the last terrifying episode, K has been doing ok. No scares.

We have her on the nebuliser with saline, together with Flumecil, to loosen her mucus or secretion.

I am glad to say she is doing much better now. We managed to stay out of the hospital throughout these period of time, which is kind of an achievement. But of course, we needed an oxygen concentrator to tide us through at home.

One thing we noticed is that she dislike even more turning her head to her left. It seems like she has a bit of phobia of not being able to manage her secretion.

Starpals doctors and nurses are still concerned with her right upper lobe as her air entry sounds unequal. Even when she is well, her air entry sounds unequal.

But it has been like this since about 2 years ago. Chest physios even when she is well doesn't seem to make it better.

Resuscitated

Just as we thought K is getting well after this episode, we probably lost K for a while yesterday.

She was taking a bath when she couldn't manage her secretion. Sensing problem, my helper accounted that she brought K to her bed to clear her secretions.

Suction was done but very promptly, she became unresponsive, eyes closed.

She had to be resuscitated. We are very thankful for my helper's response. K came around.

When I reached home, I was anxious but glad to hear her cries.

We got Starpals to come have a look to make sure that the lungs are not compromised.

Hours after that episode, she can play with the nurse and doctor who came.

Although well now, she still has got thicker than usual mucus and secretion We think K got choked by a mucus plug that led to this episode.

Mucus plug is the bane of these kids with low lung function as they do not have the strength to swallow or blow out strong enough to expel the secretions.

Thank God Kaelyn is well and good as of now

Low grade fever

Kaelyn suddenly had an onset of fever, thick mucus and secretion in the nose and mouth/throat for the last week.

Thick mucus and secretion is the enemy of patients with low lung function. Suspected culprit was probably a viral infection.

We went though an oxygen tank in half a day. We still have another spare. We are trying our best to not go hospital. 

Thankfully we were able to loan an oxygen concentrator from Starpals to get us through. Only her upper respiratory tract is affected. So long we manage her secretion and mucus well, it should be ok.

Looks like an oxygen concentrator is next on the list.

Playtime with a new toy drum

With K, playtime is different from other kids. If we want her to engage in some play, we had to assist her. For example, play cooking while she is lying down will require us to hold her hands to move through the motions of say stir frying a toy chicken or some sorts.

Whenever possible, we always try to K to engage playtime with her own strength.

Since we loaned the tumble forms sitter, we usually just have her sitting up, watching the TV or maybe tasting some of the puree we feed her.

Last weekend, grandma bought her a toy drum set after her cousin destroyed hers. We decided to work the sitter with the sling frame while letting play her new drums.

The frames sits over her in the sitter, with the slings supporting her upper limbs from the frame. She gets to swing her arms on her own to bang the drums.

Her grip is weak as she drops her drum stick after swinging it a few times. Had to leverage on the sling to support it.

While sitting up, this little miss busybody also gets to look at our neighbours next block (Full length windows are great!) Her eyes are ever so busy.

She sits up at 45-60 degree angle for about 40 minutes, dropping the angle once to let her clear her secretion when she didn't manage it too well.

When the park downstairs is ready, she can sit up, peer down to look at the activities going on down there if she isn't already there.