In one week, Ben will go in for his first PFT. We are very fortunate that our clinic does infant PFT’s. They are harder to perform on young children but will be very helpful to have a baseline for Ben’s lung function. He will have them done yearly. We can compare his numbers from year to year thus allowing us to add medicines/treatments as needed to keep his lungs in optimum shape.
Ben will need to be sedated for the test but luckily it won’t require IV’s. He’ll have an oral medicine, chloral hydrate administered that should knock him out fairly quickly. We know from his PICC line and chest CT that he needs a high dosage. Our guy is stubborn and a fighter who doesn’t like to go down easily!
Our test is scheduled for 9am so I have to get Ben (and myself and possibly my mom!) up by 5am so he’ll be nice and sleepy for the test. Doesn’t sound too bad, except for the fact that he can’t eat 6 hours beforehand. Unless, I want to wake Ben and myself up at 3am to eat, he won’t get any food that morning.
Once Ben is under, he’ll be put into a chamber with a jacket around him similar to his vest jacket. A mask is placed over his face and air will be forced into his lungs, later forced out by a gentle hug from the jacket. This will be done a couple times to make sure they get accurate numbers. His heart rate, oxygen levels, and carbon dioxide levels will be monitored the entire time. It sounds a bit scary but I know several other CF kids that have gone through it and the test results will be extremely helpful in the future.
Gavin has one done every couple months. You can read about his HERE. Nathan, has also had them done. Click HERE to read and see pictures of his experience.
The test should only take a matter of minutes. Once it’s done, he’ll be pulled out of the chamber. We will then go into our clinical trial but more on that later. Once Ben is awake he can eat but we’ll need to hang around until the doctors have checked him out and given us the green light to go home. I know it will be a long day but I am excited to hear the results. Ryan will miss out (lucky dog!) because he’ll be in Vegas for a convention so my mom is the lucky one to help me with the day. I hope to get pictures to document the day.
Please keep us in your prayers!
Good luck! Maybe this will help him:
ReplyDeletehttp://www.youtube.com/user/welcometojoshland#p/u/6/zXiGkbZx_Yg
Then again, he's still pretty little. ;-)
He'll do great!!!! Hopefully your clinic actually knows how to use the chamber, unlike mine. LOL
ReplyDeleteI am contemplating switching clinics...We go for a "consultation next month" at this new one i've been looking into and I'm crossing my fingers that this new clinic does infant pfts!! You are so lucky that your's does this..it seems the west coast is so far ahead of us east coasters!!!! Been thinking about you guys..hope all is well with you and your adorable family!!!
ReplyDeleteI don't think anything like this exists in the UK!?
ReplyDeleteWhat a great test to have, we have to wait until Soph is able to do blows.
Wish you all lots of luck and that the numbers are HIGH!
Take care xx