February 1st was one of our four yearly check ups we do at Doernbecher Children's Hospital Cystic Fibrosis Clinic. We began coming to the clinic soon after Quinn was released from the NICU when he was a month old. The staff has been AMAZING and for two very freaked out new parents they were calm and honest and thoughtful and so helpful. They are passionate about helping kids with CF and have helped us navigate this journey.
Quinn gets all his vitals taken: 37 lbs 4.1 oz, 3 ft 4.95 inches. A pediatric pulmonologist talks with us about Quinn, asks Quinn questions, jokes with us, and then examines Quinn thoroughly. The big deal is listening to Quinn's lungs with a special high powered stethoscope. The doctor is listening for blockage in the lungs. The sooner we can catch something the better chance we have of treating it effectively and minimizing damage.
Quinn is in the 10% of kids that are diagnosed with Cystic Fibrosis because of intestinal blockage at birth. While it was a horrible experience to journey through those first weeks in the NICU, I can say that I am thankful that we have known from the very beginning about the kind of care Quinn needs.
Nurse Ben really should wear a cape because he is kind of a super hero in disguise. If we have questions about Quinn's health--a lingering cough, a weird bowel movement, a trip to the swimming pool, a question that I don't know who to ask--I call Ben. A few months ago Sela had a cold and I went into overdrive thinking about how to keep Sela and Quinn apart. Sibilings. Apart. Really? So I called Ben and told him I was feeling really anxious about keeping Quinn well and that I needed to hear the medical perspective on that concern. And he graciously obliged. When we are unsure of what direction to go, Nurse Ben always helps.
Quinn and Sela entertain each other in the exam room. You can do a lot with purple surgical gloves that can be blown up. Mini-balloons come in handy. Sela knows all about Quinn's therapies--she'll often pretend to pound on her own chest.
We see a social worker and the ever important nutritionist. While most nutritionists would talk about fruits, veggies, and cutting back on sweets, our nutritionist offers Quinn a choice of snacks: Oreos, Reese's Peanut Butter Cups, or fruit snacks. The more calories, fat, and protein the better. Quinn chose the Peanut Butter Cups and for him, that is a healthy snack. He ate three today.
It was a good visit. Aside from Quinn crying because of the throat culture which they do at each visit, things went well. No new sounds in his lungs and no major changes. We are adding a half a can to his g-tube feedings at night to get him some extra calories. It is hard for this kid to eat 1800 plus calories a day. We are always thankful for good visits. Our next one in May will involve chest x-rays of Quinn's lungs and blood draws. We might all need Peanut Butter Cups after that one.
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