Caelen's Quest: Rejoice!

11 April 2014

Rejoice!

Always been a side-sleeper

C's respiratory doctor had returned from leave. We took the first opportunity to explore the possibility of reducing BIPAP pressure settings so C could quickly resume usage. Dr B was very understanding and see to the changes immediately. Pressure was dropped from 15/7 to 12/6.

First night of trying yielded surprising results:
09:00pm   Mask on
10:30pm   Fell asleep
11:00pm   Woke in state of shock, heart-rate climbed to 170
11:20pm   Returned to sleep
07:30am   Slept till next morning

Second night was a breeze:
09:30pm   Mask on
09:45pm   Fell asleep
07:00am   Woke up

It definitely brought about hope and peace of mind knowing that C is quick adapting and is able to breathe properly during sleep.

Mid-week, we made another trip to KKH for a scheduled (video)fluoroscopy. C being a glutton, completed the procedure effortlessly. Nom nom nom, doctors monitored the motion x-ray display and voila! he's done in less than 10 minutes. Doctors observed droplets of milk entering and exiting the top of his airways, C is at risk of asphyxiation. Taking preventive measure, we were instructed to change his bottles and teats to one with extremely slow flow (so slow that C became impatient as he took 20 minutes to finish a feed). While drinking poses a risk, doctors were somewhat satisfied with his ability to take blended food. In fact he fared better eating than drinking and hence agreed that C continues to eat as tolerated, which is just as well since C loves to eat.

Other than going for appointments, what has C been up to lately? Well, he is pretty much growing up like a normal child. He prefers to be up and exploring than lying on his bed. We thus try to accommodate whenever possible, carrying him around teaching him new things. C is also fighting to be more independent too, wanting to hold his own bottle (provided it's not too heavy for him). See how elated he was doing that!

I hope to see more milestones coming. Surprise me baby :)

Before I go, this entry is for tonight:
10:10pm Mask on and fell asleep

Blessed. Good night peeps!

P.S. Uncles & Aunties: Thank you for your generosity and kindness. Little C is very thankful and blessed to be loved by all.

1 comment:

Yin May26 April 2014 at 00:44
I am very happy to hear that the setting was dropped to 12/6. That was what Vera was started on when she first starting on mask therapy...as they say, slow and steady wins the race! Can always slowly climb up to 15/7. Hope that the day will come when he loves his mask...and you'll see that the bipap therapy will work wonders for his quality of life. Jia you!
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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