Caelen's Quest: Third Hospitalisation

23 August 2014

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.

No comments:

Post a Comment

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