Shay’s Medical Routine

Shay is currently on a regimented medical schedule consisting of medicine and physiotherapy. Every day, he takes creon, chloride (salt), and a multivitamin orally, and then we complete a PEP mask physio routine.

The creon are tiny granules that are measured out depending on his weight and how much he is eating at each feed. This is administered to him atop a small amount of apple puree just before each feed. He was a champ weaning at just 3 weeks old! The creon helps him to absorb the fats and proteins from the feed so he can grow strong and healthy.

He also takes liquid chloride (a component of salt) and a liquid multivitamin, both of which are administered via bottle mixed with breastmilk. The chloride attracts water to the cell surface and helps to keep the mucus layer in his organs as thin as possible, while the fat-soluble A, E, D and K vitamins help him grow.

Shay’s daily physio routine is completed in two parts: a PEP mask and hand compressions. The PEP mask is held to his face, covering his mouth and nose. At the end of the mask is an entry way to breathe air in and then a separate exit way that is very narrow for his exhale. Think of blowing through a very thin straw, like one you would get as a stirrer for your coffee. This resistance in the airways helps move unwanted mucus build-up. We do this for 30 seconds on each side followed by 'huffs', which are side compressions to force a good breath out of Shay so we can listen for any crackling or feel anything blocking the lungs in his breaths. The PEP mask and huffs are then immediately repeated a second time. Shay completes this physio routine once daily; however, if he has a cough or is on antibiotics, we make sure his physio is done twice a day.

Finally, his nebuliser is used when he is unwell. So far, we have only used it once for 5 days. This is another PEP mask that is attached to a nebuliser that uses a diluted amount of chloride to help clear the airways.

While this all may sound like a lot, we know we are extremely fortunate to have all these medicines, physio routines, and preventative measures to help from further damage to Shay’s organs as a result of his cystic fibrosis.