My son is almost 11 weeks old and is already earning himself an income. Yep, that is correct, pretty impressive huh! Today, we enrolled him in a research study that our doctor, Terri Laguna, is conducting and it will pay him $150. Into the college fund it goes!
There is very little research done on infants w/CF and the U of MN is trying to get as much information on the young ones as possible. They know that changes occur in the first year, but right now they do not have a way to track those changes. At this point, there is no way to predict how "severe" Gavin's CF will be and they are trying to find ways to predict these severity levels of CF to allow them to conduct better preventative therapies to keep CFers as healthy as possible. They will take urine & blood samples from him along w/doing a bronchoscopy on him (to check his sputum) when he is 6 months & 1 year of age.
Also at 6 months, they will do an infant PFT on him where he will need to be sedated (not part of the study, this is for all CF babies at our clinic). A PFT is a Pulmonary Function Test where they can test his lung functions. This is a common test for all people with lung issues (asthma, CF etc). When he gets older he will be able to blow into a machine to measure his functions, but as a baby they have to do the breathing for him. He will be slightly sedated (just asleep but still breathing on his own) and a life jacket like coat will be placed on him. A mouthpiece will "breathe" air into his lungs and the jacket will compress to expel his air. Because he will already be sedated, this is when they will do his bronchoscopy for the research...it will all be done together so it will be easier on Gavin. The only reason they have to go into his lungs (bronchosopy) to get a sample of sputum is because he is too little to cough it up himself, another reason why there is so little research on infants. Very few CF centers conduct PFTs on infants because of the technology needed, so we are again SO lucky to be at the U of MN! But I have decided I do not want to be in the room while they conduct the PFT & bronchoscopy...just too much for this mom to see!
Casey and I are also signed up for a research study being conducted on parents of CFers. There is a trend of severe sinus issues (which I had growing up) with CF carriers, but not with all CF carriers (Casey did/does not have them). Through bloodwork, they are trying to find a pattern/trend so that they can better understand the sinus issues with CF patients. We don't get reimbursed for this study but that it is ok with us!
We have decided that we will enroll in all research studies that we or Gavin qualify for, as long as there are not too many risks/consequences. We are determined to help in every way we can to end this disease and to find a cure. Maybe I get this from my Grandpa being a doctor or maybe from watching my dad suffer from a terminal lung disease...whatever can help our little man and those in the future is always a positive! My dad once told me, "I am doing all that I can (lung transplant, meds, treatments etc.) to try to live longer for you kids and also to help the doctors in their treatments for people in the future. If it helps someone ten years down the road, then it was worth it." Little did he know that what he taught the doctors after his lung transplant may very well benefit his grandson. Thinking about that often gets me choked up, my dad was such an amazing person!
A study on Gavin's stool sample we gave at our last appointment proved what we thought, his pancreas is insufficient. Meaning, it does not produce any enzymes to help his body absorb fat & certain vitamins. Disappointing, but what we expected. We also retook his sweat test today (he didn't provide enough sweat last time), which came back positive at 107 (normal is below 30). Also what we expected. We're glad everything has been "by the book" so far and Gavin has not left any of the doctors scratching their heads trying to figure out what is wrong. The fact that his pancreas levels are low (below 50, normal is over 200) does not make him more apt to get CFRD (CF Related Diabetes) nor do his sweat test results predict the severity of his CF...that will all be determined in time.
Oh by the way, he is now in the 60th percentile for his height to weight ratio.....Goooo GAVIN! Our doctors are thrilled! For those of you attending the walk with us on Saturday, you will get a chance to meet Gavin's team of doctors :)
We asked Dr. Laguna about the swine flu and she told us to handle it just like we would any other normal flu outbreak. Don't go around sick people and wash your hands! So the whole family will be attending the walk!
Now to just find a research study that Louie (our dog) can qualify for...haha!