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Feb 8, 2016 Latest post:
Dec 29, 2016
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Mason’s Story Thank you for visiting Mason’s Site!
We found out Mason had Cystic Fibrosis when he was 13 months old. He had quit growing at 6 months and doctors became very concerned with his Failure to thrive. After many various tests, formula changes, and frequent bouts of ear infections and pneumonia, one pediatrician in the group sent us for a sweat test. All other testing was an update over the phone but I knew this one was different when they called at 1 pm that day and asked if I could come to their offices at 4 pm. Once we arrived, the news was delivered that he had CF. That year of life he was in and out of the pediatrician and CF clinic with 9 times for pneumonia and another set up PE tubes. For years, I believed that I could get enough calories into him to maintain his weight. This seems like it would be easy and may have been if my pride was not in the equation. I thought, I can feed him enough and every appointment was depressing when we did not meet our goal weight and was nonexistent on the growth charts. In March 2010 (his Spring Break vacation), we made the decision to have the G-tube, MIC-key button inserted for overnight supplemental feeding. Looking back, I should have done this earlier since was 9 years old and had not reached 40 lbs. He started gaining weight immediately and we have had high steady lung functions until now. On November 4, we visited the CF clinic for his regular quarterly appointment. He had lost 10 lbs and was down to just 81 lbs and 2% BMI. The Dr told us she wanted to admit us then but would give him 3 weeks to increase his feedings and sent him home with strong antibiotics. We were all elated since Mason had received a huge blessing by receiving in his Orkambi the day before Thanksgiving. He was on his medicine only 2 1/2 weeks when we went for his next appointment. Upon his visit, they claimed we had the most weight gain they had ever seen in between visits of 18 lbs and almost 3 inches in height and needed to give him a trophy. Even though his FEV1 and volume were still low, they believe that would improve since lung functions and weight gain correlate. February 4, we found out that his FEV1 and volume were still on the decline and with his lead Dr. we were asked to have a chest X-ray to see if anything was visible and would have to wait on the radiologist to read the results but they wanted to admit him since his lung functions were hovering between 50-60%. We were given two possible dates to go into the hospital so we will go on Feb. 18th. The radiologist's opinion is that he has pneumonia and atelectasis with mucus plugging (collapsed lung). Mason feels great and since this is really his first hospital visit he has been ordered to have, he and I are little anxious. He will have a PICC line inserted and while under anesthesia will have a bronchoscopy to clear the blockages directly in his lungs. This will also give them a view of any permanent damage and allow for additional labs of anything that could be lying dormant in his lungs.We know that he is in the wonderful hands of our Heavenly Father. He has blessed us so much with Mason’s health and new findings in the Cystic Fibrosis research and medicines. Continue to prayer for Mason, his doctors and all the staff who will be helping him regain his health!