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 ♡ 

Stressful Month

It is 11:00 p.m. and I am just about to have dinner (yes, you read me... 11:00 p.m.).

In case some wonder where we've gone. Well, we've been busy fighting 'fire' at home. C spent 10 days in high dependency ward early June and while we were about to get on with the new routine (of suctioning and tube-feeding), C caught a new bug. He was re-admitted on Monday, spending another 4 days in hospital. Apart from the bout of broncolitis he was having, blood test and swabs showed the presence of Adeno virus and MRSA bug. As the virus was highly contagious, we were placed in isolation ward for the entire stay.

Coming home was something I looked forward to. Just as I was settling down at home and about to spend time with family, Cayla came down with a fever. Since both children were vulnerable to cross infection, they were immediately quarantined. While C was making a recovery, Cayla was sent to the hospital the other night and she is still fighting a stubborn fever at grandma's.

This is a stressful and difficult time for the entire family. The constant worrying and round the clock caring for the children is driving us nuts. Looks like it is going to be a while before I do another update on this blog. Be back ASAP...


P.S. Anya, Armaan & Bridget: Strangers we are but we will never forget your kindness and love for C. We got your message, yes, C is recovering. Thank you angels.

Caring For Caelen

Today is my 8th day at the hospital possibly many more days to go. Seems indefinitely delayed for many reasons.

I ate, bathed, slept and breathed hospital air. Ward 65 is my home now and frankly I am so in need of a good grooming session. Sadly, during my stay here, I only had a 30-min bonding session with Cayla when she visited.

Learning how to connect the parts

C checked in last Tuesday and was immediately hooked up and tubed. Over the last week, he made good progress and was slowly off drip, oxygen, day BIPAP support and therapies. Unfortunately C was traumatized by the never-ending suctioning and soon refused to feed orally thus the need for NG tube. In order for C to be discharged, I need to learn how to suction, tube-feed, intubate and change his NG tube (successfully under supervision, 3 times, once each day which equates to an additional 3-day stay in the hospital). So poor mommy here has been taking up hands-on sessions with the homecare team (enthusiastically) to speed up C's discharge. The enthusiasm is somewhat dampened by many hurdles along the way (i) the need for more than 10k worth of new machines e.g. BIPAP, humidifier, desktop oximeter, suction machine, oxygen tank, a long list of consumables. The acquisition of which requires time and this further delays his discharge (ii) the time required to complete my hands-on (iii) the tons of information on patient care, machine usage and care etc to digest (iv) meeting with medical social work to discuss on possible funding (if we are even eligible in the first place).

First time intubating (inserting tube from nostril to stomach) and suctioning C was rather successful (if you could just ignore his screams and cries during the process). Luckily I'm not one who hesitate at the slightest protest or squirms at the sight of blood. I'm still hoping for the earliest possible discharge. Till then...

First Hospitalisation

C was admitted to KKH High D Ward just 3 hours ago.

It was a cough that started the day before, got worsen by the day accompanied with a high fever of 39.5°C. His sats were not looking good. SpO2 at 92 while asleep with BIPAP. It even dropped to 87 at one point. On seeing that C was in agony, we decided to make a trip to the hospital.

After initial assessment, doctors suspected a case of acute bronchiolitis, felt that he could do better under close supervision and advised for C to be admitted. In the next few hours that followed were many tests, poking and plenty of beeping from the machine. Prick test was done. Swabs from the nose, armpit and groin were collected. A drip set on his tiny hand. Oxygen mask donned his face. Sensor probe on toe to monitor his vitals.

C fell asleep shortly before 5 a.m. and as for me I'm blogging away to pass time. How to sleep on a wooden chair in a freezing room? And to think that I'm going to be here for the next few days sigh...

A Warning

From the time we had received the trial BIPAP machine till the time the new machine was delivered, masking C was often met with difficulties, either he was unwell or something just had to break down. For that reason, we had decided that C could enjoy a little more days of natural sleep without machine intervention through careful monitoring. He was doing very well for the longest time I could remember. Drops in SpO2 were rare.

Friday night was different.

The first alarm was triggered before midnight. Oxygen saturation on the oximeter read 84% and it continued to dip by the second - 83, 82, 81...  77, 76, 75...

In the past, C lowest SpO2 was at 72% so I wanted to prevent it from reaching that. I began to gently stroke his chest hoping to wake him up from deep sleep (usually my touch would wake him and send his pulse rate & SpO2 back to normal level). This time, no response.

70, 69, 68... the drop did not stop. Worried, I hasten to wake him but to no avail. I grew desperate and started calling and patting him. My gaze were going forth and back, on C and on the dreadful numbers reflected.

62, 61, 60... finally, C stirred and I breathed in deep for the first time. His SATS started climbing and things were soon back to norm. I did, however, noticed that his pulse rate was fluctuating and SpO2 was at a lower than usual 96%.

Few minutes passed and the alarm sounded again. Two more dips ensued. I then alerted hubby to be on standby while I changed a new sensor probe to ascertain the erratic readings. I had the BIPAP and mask ready too. Things quieten down for the next hour and just as we thought it was over, the cycle started again (even though the drops were not as drastic). By the sixth drop, we were ready to mask him. C usually fights hard when on mask but this time round, he fussed only because we shifted him. He went right back to sleep shortly. No more beeping and no more heart-stopping moments.

Tonight, even though C is doing better but I do see slight drop and decided that he should stay masked. Wondering if it's the Monday jab at the polyclinic which is making him weaker?

Anyway, shall continue to do my night monitoring and I do hope tomorrow will be a better day.