Post bronchoscopies clinic appointment. Everything looked perfect. R's lungs sounded wonderful and he was a picture of health. Our only concern is his acid reflux. They performed a test from his bronch and he scored a 3/3 (3 being the worst.) So we have once again changed his meds. He is now doing 7.5 of prevacid which is a melt away tablet and he can now chew it up. Previously I would melt it in milk and give it to him via syringe. He is growing everyday and he gladly chews up his little pill. At night we still do 2ml of Ranitidine. Thankfully, he doesn't act like he has any discomfort from his reflux so when they said they were very concerned we were so confused. Ha! Cystic fibrosis being sneaky again... R hasn't been coughy or grunty at all since his bronch. Praise the lord he is doing wonderful. I am truly so thankful for his health.
Oral evaluation time. This appointment was to ensure that R knew how to eat and he didn't have any issues with textures, oral confusion, and etc. R passed with flying colors. The wonderful staff had zero concerns and gave us the go ahead on soft solid foods. They believed that r's lack of appetite is due to the amount of milk he consumes. The team simply said to keep on keeping on and sent the good news to clinic.
We will be heading back to Knoxville to the synagis clinic to receive the synagis shot.
A few days ago we received a letter in the mail about the synagis shot and RSV. It talked about the severity of RSV, symptoms of RSV, and the synagis shot. Synagis is a prescription medication that is used to help prevent a serious lung disease caused by respiratory syncytial virus (RSV) in children at high risk for severe lung disease from RSV. This shot is given 4-6 months of the year and runs between $1800-3600 per shot. Yikes! Thankfully our insurance was fast to approve R was this medication. (Many families have issues with their insurance trying to get approval and many end up paying for it out of pocket.) This medication is not a vaccine but should lower the severity of RSV. Respiratory syncytial virus, or RSV, is a respiratory virus that infects the lungs and breathing passages. It can be very detrimental to children with chronic lung disease, congenital heart issues, and weakened immune systems. The statistics of CF and RSV combined are quite scary... Furthermore, we are praying that God keeps R safe and helps the synagis to do it's job. Please pray that R's body will do great with the shot and he will not experience any of the scary side effects. Also, please pray for all the children who are unable to receive the synagis shot and those who will get RSV in the future.
Please continue to pray for us!
Thank you! Happy Fall!