My Great Strides Story
We walk for Rhett!
When we brought baby Rhett home on New Years Eve we were sure that he was going to thrive and be as healthy as we had planned. Our entire World was turned upside down on January 11th when we received a very unexpected phone call from our Pediatrician letting us know that the newborn screens came back abnormal for Cystic Fibrosis. Our worst fears were confirmed on January 13th.
Rhett has two CF mutations. The very common DF508, and the more rare mutation 2184delA.
We began pancreatic enzymes for pancreatic insufficeny immediately, as well as salt substitutions and vitamins. At just one year old, Rhett takes a total of 5 pills with each meal/snack. This comes out to 25-30 pills per day. Can you believe it... He can SWALLOW pills WHOLE! Once we found an enzyme that worked, Rhett began to grow rapidly.
At 5 weeks old, baby Rhett was hospitalized with RSV. We spent a total of 21 days in the hospital. 5 of which were in the PICU. During this time frame our sweet little guy developed another case of Pneumonia. He had a procedure to place a PICC line and received very strong antibiotics for 10 days.
Thankfully we managed to stay hospital free for 9 months. But the day after Thanksgiving he was admitted for Paraflu Virus. (AKA Croupe) We managed to avoid ICU this go around, and we are so thankful for that. On day 4 of being hospitalized we found out that he cultured Pseudomonas. This is a very harmful bacteria for patients with Cystic Firbosis. It is often resistant to antibioitcs and diffuclt to get rid of. Patients who culture Pseudo are considered "chronic." Such a sad day for us!! Rhett underwent a second procedure and PICC line. Thankfully we were able to go home with his PICC line 2 days later and administor IV antibitotics from home. Antibioitcs were given via IV 4 times each day for a total of 15 days. He took it like a champ! In this time period we also increased breathing treatments.
Rhett currently does 3-4 Albuterol breathing treatments each day. 1-2 Pulmozyme breathing treatments and takes a steroid via inhaler 2xs a day. This on top of his 25-30 enzymes per day. Rhett is finally big enough for his vest, and he loves it! His favorite thing is to hear himself talk/voice shake when he has it on. It also tends to put him to sleep. Bonus for Mom!
At just one year old Rhett weighs a whopping 20.5 Lbs!! He is crawling (well, scooting!) and pulling up on everything. He can say several words already as well as sign several words. Big Brother, Kason, will gladly let you know that his first word was BUBBA!
Rhett is truly the happiest baby in the World and doesn't let anything stop him from smiling. (He has come a long way from screaming and crying 23 hours a day, when he was smaller!)
We are overjoyed to have this sweet boy in our lives and pray daily for his health and a cure!!
- Jeremiah 29:11
Rhett Jackson Mackie