Caelen's Quest: A Warning

25 May 2014

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.

1 comment:

Yin May2 June 2014 at 19:52
Hope C can gradually accept the mask, and it becomes his new normal. We understand that it is like spectacles - if they don't wear, the degree can increase over time. When there is a period of flu esp, the mask helps Vera to breathe through the mucus and help her to rest to recover.
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Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA