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 ♡ 

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...

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.

New Gadget

Ta-da! A delivery on April Fool's Day! Latest addition to our collection of gadgets - a handheld oximeter which cost me $1,200 and the box of probes (far left in pic) cost another ridiculous $640. My jaw dropped when sales rep quoted a whopping $3,200 for a table-top oximeter!!! That, is another heartache for another day... when my heart is stronger (I doubt).

To cool things off a little, we have decided to shave off C's hair. Weather is way too hot and humid for his liking. How's the new look? I thought he is still as handsome.

C has been making tremendous progress in his linguistic skills. For a one-year-old, he is already using short three, four-word sentences e.g. 我要这个，我要那个. His vocabulary is quite impressive too as compared to Cayla at his age. I suppose his language skills compensates for his lack of mobility and he is able to tell us what he needs and wants. He does the talking, we do the walking haha. See, God is fair. Mommy is really proud and can't wait to review his progress in few months' time!

Sleep Deprived

We failed to hook Caelen to the Oximeter on the first night. The beeps from the machine kept him up and he hated the sensor that was attached to his toe. After battling with the cranky sleep-deprived baby for over an hour, we decided to drop the experiment and let him have a good rest.

We had better luck the next day. Caelen was totally exhausted after skipping his naps in the afternoon. We hooked him up with ease soon after and so our 2-day data collection mission begins...