A day in the life - my daily routine

 

TO BREATHE 

 

At least twice a day we give Adam inhalation therapy followed by postural drainage - an airway clearance technique that along with chest percussion (chest clapping) helps loosen the thick mucus so that it can be coughed out. One inhalation session followed by chest physiotherapy (CPT) lasts between 45 and 60 minutes (depending on the type and volume of drugs administered through the nebulizer). During an infection Adam needs inhalation and CPT four times per day. Together with the cleaning and sterilization of the nebulizer, the total time spent on chest physiotherapy may even be 3.5 hours per day.

 

Sometimes we use our new portable battery-operated compressor and give little Adam his CPT outdoors!

    

 

TO FEED

 

With every meal, Adam needs pancreatic enzyme replacement (Creon) as pancreatic insufficiency means that he cannot digest and absorb nutrients from food. Eating protein and fat-containing food without or with too little Creon means that food remains undigested, which would give Adam strong abdominal pain and diarrhea. On the other hand, taking too much Creon could cause an intestinal blockage that might even require a surgical intervention.

 

Since little Adam learned to chew and started eating a variety of foods, adjusting the doses of Creon has become really difficult because we cannot always precisely guess the weight and fat content in the food ingested (such as soup, pancakes or meat). It is a learning process - either way, getting the dose wrong has its consequences and we are under constant stress that an error in judgment on our part can cause Adam discomfort or pain.

 

Despite our best efforts to provide our son with a high-calorie diet, Adam’s weight still wavers around the third percentile, which hampers his physical growth and weakens the overall capacity of his body to resist and fight infections.  

 

TO STAY OUT OF HOSPITAL

 

We hope to avoid hospitalization for as long as we can. CF patients are routinely hospitalized for pulmonary exacerbations, which are often caused by infections that are normally harmless to healthy children. To protect Adam from infections, we need to avoid crowded places, such as supermarkets or restaurants, and minimize contact with people who could be a source of infection. Unfortunately, this also means isolating Adam from other children. He will likely be advised not to attend kindergarten, and whether or not he will be able to attend regular school classes with his peers remains uncertain.