January 13th, 2014
Weight 15.17 lbs
Height 24.29 in
Creon: 24 (3000 mg) pills a day
Growth Status
Yellow: Needs Improvement
Weight: Gained 11.68 (expected weight gain is 20-30 ounces)
Height: Grew .51 inches (expected height gain is .9-3.5 inches)
Medications per day
Salt 1/8 tsp
Pulmozyme 1 Vial nebulized daily
Creon 14 (6000 mg) capsules a day
Creon 14 (6000 mg) capsules a day
Albuterol 2 Puffs morning and night
AquDEKs 1 mL
Synagis 1 mL once a day every 30 days
Tidbits
- We were trained to administer pulmozyme. Pulmozyme must be refrigerated. Administered through a nebulizer. Takes 8-12 minutes to complete. Mask and cup must be soaked in soapy water then sterilized.
- Our new nightly routine is 2 puffs albuterol, pulmozyme, then CPT.
- Our insurance refuses to cover Pulmozyme, calling it a specialty drug. This is like denying chemo for a cancer patient. Pulmozyme is primarily the reason the life expectancy for CF patients has increased so dramatically. Without insurance, it would have cost us $2700 a month for Pulmozyme alone. We have begun the appeals process. By some miracle the manufacturer is willing to give it to us for FREE until we finish the appeals process. Tender mercies do exist!
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