So our Tuesday started off early with fasting and labs at 8am. Then we met the entire team of Cystic Fibrosis Shands Drs to discuss Harley’s current pulmonary health and conditions.
It seems that Harley’s CF lung damage is progressing based on the current CT scan. So to work on some respiratory issues we will tentatively plan for a tuneup hospital admission sometime in April right after the CF Carshow. Currently he will start some home antibiotics and increase airway treatments. This is simply routine protocol doing home treatment prior to hospital admissions.
One of the Cystic Fibrosis bacteria which Harley has been battling is called a Mycobacterium, it is a type which is common to Florida and found in many places even the water and soil. We have been advised that we should look into special filtration for our family’s well water. There are many ways to avoid this particular Mycobacteria like wearing a mask when mowing, avoiding airborne leaves and dust, boiling-filtering or treating well water with proper chemicals, having water pipes and air filters tested and changed often ...as always washing hands is still top on the list. Still can’t keep the kid in a bubble...we just have to balance the joys of life with the quality of life.
Speaking of quality of life and drinking.... Harley drank down the sugary oggt drink for his sugar test today and he did not like it, he had to wait 2 hours for labs with fasting.... he thought he stomach was eating itself but we fast with him! We always fast as a family! He can’t wait to get some Chic-fil-A.
After we finish with everything at this appointment we will head to Orlando where Harley will begin his cleanse and will fast again for Wednesday 6am surgery.
The EGD, colonoscopy and esophageal banding will be hard on our boy so we ask that you continue to pray for him throughout this week.
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