Third Hospitalisation

This was his 3rd stay in a High Dependency Ward in 2 months.

Tried our best to manage it at home, went to the extent of supplying oxygen to ease his cough but didn't help much. By 2 a.m., he was coughing so bad he could hardly breathe. He soon ran a temperature and was looking weak. We knew a hospital stay was inevitable and admitted him on 17th.

The usual swabs, blood tests, x-ray ensued. This time round C was tested positive for RSV. He was desating on room air as well as on BIPAP, unable to maintain a healthy oxygen level. At his worst, doctors were supplying 4 litres oxygen with BIPAP support. Good thing was he made speedy recovery and weaned off oxygen quickly.

Reading a book after gaining strength

C was discharged on 22nd and is now home nursing. 

Low Oxygen

C took his MMR vaccine last Tuesday, came down with a fever shortly. I half-expected that because it's a norm for him. He was generally agitated and appetite was poor. With a weakened body, his ability to swallow was affected as well, choking more than usual, be it during feeds or sleep. Just as the fever subsided, his occasional choke-coughs quickly turned into a constant cough that would not go away. C began to desat while he slept and gotten worse by the day with oxygen level dipping 90% and below.

I quickly supplied him with medication and stepped up on his suctioning frequency hoping to ease the cough but it didn't. Left with little option (apart from heading to the hospital), I seeked help from other families, homecare nurses & suppliers, who rendered help and supplied me with an oxygen concentrator to tide over the weekend.

What a gigantic piece it was!

The noise it produced sure matched its frame, loud as a generator.

The new machine arriving next week would be more compact and quiet or so I was told. It better be!

New Shoes For The Prince

At recent occupational therapy session:

OT:   Hi Caelen, shall we stack some blocks today?

         (Showing C how to stack)

C:     (looking eager takes a block and throws at therapist)

OT:   Nooo... let's try again

         (Holds C's hand and stacks a block together)

OT:   Yay! Your turn! 

         (showing encouragement to spur C on)

C:     (picks up a block and throws it across the table)

C:     Yay! Your turn! (with great enthusiasm)

All:   LOL!!

Physiotherapy was entirely the opposite with C crying throughout. Therapist tried something new with him though (as shown in pic below).

This is to test his tolerance for standing upright, supposedly good for his lungs, secretions drainage, digestion etc. It is not fully upright as this is C's first attempt so the incline is approx 60° - 70°. He's obviously not enjoying any bit of it. Even his favourite ball couldn't pacify him.

Due to his condition, therapist had also suggested that we start looking into limb orthotics to manage any misalignment that may arise due to muscle weakness.

Current condition of his feet

A good start would be to acquire AFO for his feet. A custom made pair would cost us $500. This would be my assignment for August - to book an appointment with the specialist and get his 'shoes' done.

P.S. : 2nd hospitalization bill came, another $3,500. His less than 2 weeks stay in June cost us a total of $15,000 >_<||| Seriously need to work hard to keep C healthy!

Life As A Special Mom

I have recently taken a survey with KKH homecare nurses to assess the quality of life as a caregiver to child with special needs.

The sad truth is, the welfare of caregivers are often shadowed by the needs of the patients. Caregivers are silent heroes who speak little of their pains and sacrifices. No one talks about it at all! That is the reason why most people are unaware of what it's like. So come! Step into my world today and take a glimpse of my life (currently it's equivalent to no life) as a special mom.

Typically I work round the clock, 7 days a week. I get an average 4 to 5 hours of disrupted sleep and I take 2 meals a day (sometimes it's down to just 1 for various reasons but proper meals are substituted by bites on the go). Below is how a fuss-free (w/o sickness and hospital appointments) day with C is like:

7.30am     Suction C (as required)
                   Milk for C with half-hour rest

8.00am     Sanitize C's mask before storage

                   Clean suction machine

                   Top-up water in humidifier for next usage

                   Light chores

8.30am     Get C and myself dressed

9.00am     Out with C to do marketing

                   Stroll in the park

10.00am   Unload and sort out groceries
                    Bathe C

10.30am   Milk and massage for C

11.00am   Food preparation, cook

11.30am   Getting C ready for nap

12.00pm   Blend C's food, store for consumption later

12.30pm   My brunch, me time and chores

2.30pm     Meal for C

3.15pm     Play with C (train gross motor, cognitive)

4.15pm     Cartoons for C (R&R), exercise

5.30pm     Milk for C, self-play

                   Occasionally cook for family

6.20pm     My dinner

7.00pm     Bathe C

7.30pm     Time with children, chores

8.30pm     My shower time

9.00pm     Suction C

9.15pm     Milk for C

9.45pm     Prepare humidifier, BIPAP machine, oximeter

10.00pm   Put C to bed

10.30pm   Chores (if any), me time

12.30am   Alternate sensor probe on toes

(Between 1am to 7.30am -  Light sleep for me. Wake from time to time to help C flip to his sides, need to check on C whenever the machines' alarms are set off)

3.30am     Alternate sensor probe on toes

                   Milk for C if demanded

5.30am     Turn off humidifier

7.30am     Wake up

Between these, I would need to squeeze in time for machine & parts cleaning (there are filters to change, pipes to sterilize, containers to wash, parts to change weekly, machines to be serviced), maintaining this blog, raising funds for C, running errands & managing online sales, hospital appointments, social life (or rather, what's left of it). How crazy is that?

What I have written is just the physical demands for taking care of a special needs child and frankly, C is yet to be fully dependent on machine support and this is already the amount of work and time devoted to him. Other families are probably doing much more.

I hope the next time you spot a SN child, spare a second take another look at his caregiver, admire them for they have made sacrifices beyond the imaginable. Lend a helping hand for a simple gesture e.g. holding the lift/door makes their day :)

A Wish Granted

Picture this:

Warmth of the morning sun.

Cool breeze.

Smell of freshly cut grass.

Chirping birds.

Children's laughter.

Colourful playground.

Elderly doing their morning exercise.

The idea of walking C in the park holding his tiny hand and him doing his clumsy walk was planted in my head the first time I laid my eyes on him. Such a simple thought but never given the chance to fulfill it. It thus became a wish on my wishlist.

The family had a studio photography session some time back and one of the challenge was to take a picture of me walking C. Unfortunately, it had not been very successful as C was very weak and we did not manage to take very good shots. Nonetheless, the digital copies were kept on disc together with the rest of the family photos.

Last night hubby came home with 2 printouts for me. It was then I came to know of his secret mission with a friend. A complicated task of photoshop; piecing bits and pieces together to make C complete.

 

The first sight of it was overwhelming. A mixed feelings of completeness and a tinge of sadness. I think it's a feeling only some of us would understand. And yes, I cried for a long time. Thinking of the would-have-been, what-if and if-only. 

Thank you hubby for giving me such precious memories of C. I will cherish them very much.

A Porcelain Doll

An accident at the car park this afternoon.

I have always been very careful handling C all these while but made a grave mistake today - for losing my concentration, for taking my eyes off him. I was carrying C when I took a second to talk to hubby. C lost his balance and fell backwards. The next thing I knew, he was no longer leaning on my shoulder but his entire body and head hanging in mid-air and I was just holding on to the lower half of his body hip down. Fear took over me. I watched him burst into tears and the following seconds felt like eternity. I hugged him close and cried uncontrollably.

Worried sick and unwillingly, I laid him on the back seat, waited for some responses. C was still crying and I wasn't sure if it's due to the shock or if he was hurt. My hands were shaking so bad as I turned him to his side checking for signs of injury, bruising, pain and breathing difficulty. At the same time rattling to my hubby amidst sobs that I was so scare, didn't know what to do, didn't know if he was hurt, that we should forget about meeting my sister & family, go to the hospital instead.

Few minutes passed and nothing. I could not find anything conclusive but that did not convince me C was fine even though he was back to his usual self, laughing and playing. The horrific thought of C sustaining a spine or neck injury; the guilt for letting it happened did not go away. For the entire day, I was haunted by it. I think this guilt and paranoia would stay for a while.

After we reached our destination and while hubby was unloading our barang barang, I took the opportunity to explain to Cayla that I was frightened by the incident and I was sorry for screaming at her earlier. She nodded her head and shared that she was frightened too by what happened. There was a brief silence in the car before Cayla popped a question “Mommy, why 弟弟 (little brother) cannot walk?" That took me by surprise and I was lost for words, got emotional and cried non-stop.

This aside...

We received the bill for C's first hospitalisation. A whopping $11,500.00 for a 9-day stay. That was before the government grant, Medishield coverage and Medisave deduction. Imagine us without any of these, we would probably be in debt for a long time. Anyway, am grateful that the grant and insurance took care of a substantial amount; that we have adequate funds in Medisave to offset the few thousand dollars and that the upfront cash payment was kept to a minimal $100. But how long can our Medisave sustain us, I wondered. Still waiting for the second bill to come, possibly another few thousand dollars.

For now, I rather spend my time worrying about C. I am praying that he will be ok.

Reunited

After spending the week at grandma's nursing her fever, Cayla is finally home (with an occasional cough). The siblings missed each other so much they couldn't wait to spend time together. I guessed a brief playtime between them would do more good than harm. See how they laughed and held each other's hand. Such a beautiful moment to cherish.

A short recap on C's last discharge. I had completed the necessary hands-on trainings with the home-care nurses and came home with a truckload of machines. Here are our latest additions:

From Top (L to R): Suction machine, oximeter, BIPAP, humidifier

Bought a trolley from IKEA that perfectly accommodates the equipment. It now occupies the space which used to be my bedside drawer.

Resuscitator, syringes, tubes, masks, gloves, sanitizers etc

The low built-in storage next to the trolley now stores the consumables... lots of them! No more space for oxygen cylinder so we had to keep it elsewhere. 

Apart from the daily suctioning, C has gradually resumed his oral feed and soft diet (moderately blended meat and vegetables with porridge). He has also been scheduled for another videofluoroscopy session in early August to re-assess his ability to swallow. We hope C maintains his health and continues to enjoy his privilege to eat.

Next to consider - a proper stroller to ferry C and his equipment. Costly!! >_<

Big smile from Caelen! Lots of love ♡