Rude awakening

To hear a shout in the middle of the night from Kaelyn’s room with oximeter alarming is always not a good thing.

She looks like she was in discomfort. We went through part by part asking if this was painful. she said her stomach was aching. We had to suction her thick secretion present in her mouth.
It wasn’t the 1st time tonight she had to wake up and be suctioned. I was too deep in the sleep to hear what’s going on.

We cleaned her, settled her down and stabilized her and everyone tried to went back to bed.

Another shout.

This time she was aspirating. One of the worst fear we have.

My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.



Let’s hope no more drama

Kaelyn aspirating isn’t the first time within a short time frame.

It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.

Right now K is knackered and is asleep with higher than usual heart rate. The oxygen concentrator is still humming away, providing O2 for her.

I couldn’t rest now, but just wondering…

How could we do without the oxygen concentrator for 2 years?

Silly me. By running to the hospital every time shit like this happens.

Both hospital and us could save more money by making this a subsidized standard item for special needs kid like K in the beginning. We save on hospital trips. They save on subsidies. They just need to prevent us from going to hospital 1 time less to cover the cost.

PS Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.

Just some bad days

Sitting down, and starting to type out this entry after a bumpy evening. My helper is putting Kaelyn to sleep earlier than usual.

Kaelyn heart rate was tachy and wasn’t holding her spO2 too well this evening.

We didn’t finish her sets of cough assist. We gave her a break after checking that she sounds clear enough.

She just wasn’t holding it too well today.

Seems like she’s like this when she doesn’t get enough rest.


Last Saturday was more stressful.

Same thing. Tachycardia and spO2 didnt hold up well. She even seem to aspirate her feed.

Aspiration of her feed is bad as it could go into her lungs and lungs could collapsed.

SpO2 dropped well into the 50s% (healthy is 95% and above)

We standby to bag her on Saturday. But we didn’t have to. Good not to stress her body further.

After her own record ICU stay, she’s really more fragile.

Her fingers weaker.

Ankles stiffer.

Her smile is fading.

Her voice lacking her usual strength.

The combination of the progression of her disease, splints preventing her hand movement, IV lines preventing her wearing of her AFOs just takes the poll on her.

I go to bed thinking when she recuperates enough, maybe she can wave her hands, give me a bigger smile and shout so loud from the hall, I can hear from the corridors when I come back from work.

Just a weak maybe.

She’s in good spirits most times, but it just takes lesser to set her off now.

if she starts to not have quality naps and night sleep, She is literally alarming. Her heart rate goes up to 180–190 like a sports car going into the highway and her spO2 goes below the healthy level and stays there long enough for you to worry.

It’s like screw it, I am tired breathing normally. Take 5. Breath harder in awhile. Let them go fix me a dose of O2 therapy for me. Chop chop.

We scramble around, put her into her favorite position, suctioning what we could suction, supplement whatever appropriate dose of O2 she needs.

Amidst the frantic action going on, We tell her It’s ok baby. Rest and relax, but just remember to breath in breath out.

As K’s previous therapist told us, We are going to have just some bad day now and then (somewhere along that line)

Just some bad days.

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.

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.

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.

Clinic Visit

K made a visit to the paediatrician on Saturday. Normally we wouldn't go to the clinic as since her vaccinations are done. K's condition would usually present us with a choice of either stay home or go hospital. But it wasn't anything serious.....I think.

For the last week, she had a lump on her bum. It looked like and we suspected it to be haemorrhoid to us. She was having difficulties passing motion until last Thursday, where she was really uncomfortable the whole day. My helper used suppositories on her. It did made her pass motion. But the lump was still there. So Saturday, we went to the clinic to have a look and maybe get some cream for her.

We went to the Kid's Clinic at Seng Kang, the usual paediatrician. Mummy just makes a phone call to get a convenient time slot for the clinic the day before, and we just show up at that time. The staff there know K and her condition, and have always  accommodate us by putting us to the doctor as soon as it is convenient to do so. It cuts our waiting time, which is good. I am more concerned about exposure to viruses or bacteria than the waiting time itself.

After the check by Dr L, it wasn't hemorrhoid but a small skin tear. Probably due to us cleaning her up more than usual . So all we got to do was to apply the antiseptic cream for K. That's it.

K always has difficulty passing motion. She is already on the Nan 3 HA, which supposedly makes passing motion easier. But maybe due to the lack of muscles, she might not be able to exert the pressure needed to pass motion. We haven't been too adventurous with her diet since her PEG procedure as we are afraid of clogging up her g-tube.

Breathe in breathe out

This was the mantra I told K at home when she desat as she chokes on her secretion or gets angry and hold her breath. This was what I told her as I left her for the docs to extubate her. This is the 3rd day after her op. 

The curtains were drawn closed. It reopen 20 minutes later with K on her usual mask. Not only that, they already had done an intubation on the baby on the next bed. 

K's PEG and fundoplication procedure

K lies asleep peacefully, intubated and on painkillers after her PEG and fundoplication procedure as I am typing this beside her bed. She has her bedside buddies with her. All in good hands as you can see. 

Home care session (23/08) and reflux issues

Kaelyn measured in at 10kg++ and 81cm in length. Not much weight increase this time round so feeding stays the same. An increase of about 2.5cm in length/height.

She got to try out the cough assist this time round as we requested for it previously. We only tried out a few sets at +-10 pressure settings. This is a very low setting. I guess they have their concerns as I think KKH is trying out the cough assist machine on such a young patient (Kaelyn is 18 months old) for the first time.

I think there was a positive outcome as her SPO2 increase from her average of 98 to 99-100. I shall give it a benefit of doubt that it is the cough assist machine working.

The next time round in hospital would be for her PEG procedure. I really can't wait for this actually as there is a reflux issue surfacing now. Recently Kaelyn had reflux again. This time while suctioning for her. It is worrying. I will try to schedule it earlier if possible.

Vomit episode

This afternoon Kaelyn vomited. Thankfully it didn't seem to aspirate into or aspirate enough into the lungs for her to cause any collapse of her lungs.

She desat abit. Thankfully we were around her when it happen so we could do something immediately. I performed suction for her while my helper turned on the oxygen supply immediately.

I think we fed a little too much too fast. It was some fruit purée through her NG tube. But it happen during the feeding. It only happened awhile later when I propped her up and then she started to vomit.

Best not to be too enthusiastic with the additional feeding next time round. Although small amount of food but her underlying condition leads to weak muscles, including those of the sphincter leading to her stomach, this disabling her to hold back food in her stomach.