We’re continuing to try to fatten buddy, and the effort is paying off.
He had his appointment today with Dr. Royall at the Oklahoma City CF clinic. Now, and for the rest of his life, he’ll see his lung specialist every three months. He saw his nutritionist Danielle and our other lovely clinic friends, too.
We got great news. And we got some bad news.
Good news: He is 19 pounds, 4 ounces. Better yet, he’s jumped from the 5th to the 25th percentile for body mass index.
Our goal for him is to hit a BMI in the 50th or above. Big boy has required 1,000 calories per day to sufficiently plump him up. To bump up his BMI, he’ll now need 1,050 cals per day.
The reason for all this fattening business is that CF kids who grow and gain weight normally are likely to have better lung function. Finding and fixing a growth problem will help keep Eli’s lungs healthy longer. CF is a deadly disease, primarily, because the thicker, stickier mucus a CFers’ body makes attracts infection in the lungs. Strings of lung infections, over time, scar lung tissue and reduce lung function, robbing a person with the disease of the ability to breath. So when his nutritionist tells me lil man needs to pound the kcals to get him big and keep him healthy, we’re going to follow her orders.
Each visit we get a sheet called the “Nutrition stoplight.” It gives you a score – green, yellow or red, based on how the lil CF buddy does with health indicators like BMI, height gain and weight gain.
We’ve been getting yellow. Yellow? That’s like a C. Ew. Eli was in the 5th percentile at his July clinic visit.
This time we got green. A. Gold star.
Mark took him into the clinic today, where Eli also got a throat swab to see if anything alarming is growing in his lungs. He’s swabbed for two ugly-named bacteria so far. And each time I hear the name of something new back there, I flip out. The clinic coordinator wisely reminds me that flipping out wastes energy. I do research, flip out more, contact other parents, contact a friend of mine who works at a Cleveland clinic, flip out more, etc. etc. etc. I eventually calm down, because my son is doing well. He’s thus far a robust little fellow. It’s hard to get used to this disease, is the thing. I want all of the crap that could hurt my baby out of his lungs. The thing is – the bacterias that hurt CFers lungs are often unavoidable. Pseudomonas, one of the alarming infections we seek to avoid, grows in the water tap. It likes wet, damp places, like the washer. Like piles of damp clothes. So I do things like Keep Eli’s face away from the tap when I turn it on. We keep him away from the laundry. We don’t use a towel twice. I will never let him drink from a drinking fountain. I am afraid of pseudomonas, the unavoidable bacteria, getting into his lungs.
We could take him to get his throat swabbed in between visits, which we did once, when he was sick. I’m not sure if this is necessary every month, since he doesn’t have any complicated infections just yet. Also, taking an infant with no symptoms of anything to a CF clinic means you are exposing the baby to CF germs. The clinic takes lots of different precautions with its CFers, but still, it’s a hospital. Hospitals are full of hospital-grade bugs. I’ll have to talk to staff and other other parents of CF kids to get a feel for the pros and cons of a monthly throat swab.
BTW: If you are a CF parent and want to share an opinion on this one, feel free to leave a comment or send me an e-mail using the form below.
Any how, I’m glad Eli gained close to three pounds since we last took him in. I hope nothing new comes up in his lungs.
He got a flu shot today. A few weeks back, his regular physician turned in paperwork for Synagis, a vaccine that prevents a severe type of cold called Respiratory Syncytial Virus, or RSV, which can be deadly in even healthy babies, but is more dangerous to the medically vulnerable.
And now to the bad news.
Insurance companies as of late have been denying payment for the RSV vaccine. Word on the street is, a study has de-emphasized its usefulness for CF patients like my son. That’s interesting, because the last time I checked, my infant son had a deadly lung disease. When he was in the NICU, I was told an RSV outbreak in such a place could kill, and has in the past killed, new and medically vulnerable babies.
So, as I await word from my insurance company on Synagis, I also need to try and understand why it has been getting denied lately, if that is indeed the case, as the word on the CF street has informed us.
I need to start looking into ways to fund it as a precautionary measure. Each installment of the shot costs thousands of dollars. Eli got shots from December through, I believe, the early spring, during cold and flu season after he was born, on account of his surgeries and CF. I scrambled all last winter to fund his shots, with success. I’m pretty sure we exhausted a drug company grant program during that time. I could be mistaken. I hope I’m mistaken.
I hope the vaccine is approved for my son, who we love, and will do everything in our power to keep healthy.
Has anyone had trouble getting an RSV shot approved? What measures did you take? Were they successful? Have you heard word on why this vaccine might be getting turned down lately? Do you have info to share about a Synagis grant program? Are you an insurance co. insider who wants to share a tip? I’ll keep you anonymous. The comments section and contact form are open below.