Ben’s first PFT

This has been one of the longest days ever! But the results were worth it.

Last night, we drove down to the Bay Area to stay with Ryan’s aunt and uncle. The drive to SF is long and I knew a sleep-deprived, food-deprived Ben would not be pleasant.

Amazingly enough, he wasn’t! We got up at 5 am and were in the car by 6. Ben was pretty easy in the car and we made it to UCSF with time to spare.

It was weird to be  back to the hospital were we spent two weeks. The same hall. The same smell. The same cozy coupes for Ben to play with.

We waited patiently (and at times impatiently!) for the team to be ready.  When they finally called us in, we were taken to a small room where Ben was weighed and the machine calibrated. We discussed all that was going to happen especially with Ben’s sedation.

He was first given some antihistamine to help make him sleepy, which he sucked down easily. Then came the dreaded chloral hydrate. I’ve heard that all other kids have hated it and it can be a messy fight to get down. NOT Ben!! He sucked down the entire dropper in 10 seconds. Dr. N said he had never seen a child take the CH so well. Way to go Ben!!

Then came the waiting…. It took about 20 mins for Ben to go fully under. Luckily, since he was fussy, hungry and wanted to get the heck out of there, they put Thomas on the computer. I could tell the medicine was working because he got heavier and heavier in my arms.

I then lifted him into the machine, making sure his neck was propped up to open his airways.

The blue velcro thingy (these are technical terms people) was the jacket that would squeeze him. The mask above him came down over his face.

Silly putty type stuff (once again, technical term :) ) was put around his face to ensure an airtight fit on the mask.

A test run was performed and then we started. We started with closing the chamber to perform part of the test. This only took a few minutes.

(If you hadn’t noticed, Ben is almost too big for the chamber. Looks like we’ll have to wait til he’s 3 1/2 or 4, when he can do them unsedated, to do his PFT’s again. We don’t think he’ll be able to fit into the chamber next year. Once again, I’m really glad we finally got this scheduled.)

Air was forced into his lungs, seeing how much he could hold. The test was run a couple times to ensure accurate numbers. Then the jacket was put on him to force air out of his lungs.

Our Respiratory therapist was right next to him, ready to rip everything off his face if he woke up. Dr. N stood next to the chamber, at the computer, informing me with what was going on.

The whole thing was pretty easy and pretty quick.

Now time for the results.

Ben’s FEV 0.5  was 126% (forced expiratory volume)

FEV 1 111%

Total lung volume is 113%  

All of these numbers are ABOVE AVERAGE!! That means our little CFer is doing great! We are so excited to have such great results. Our team was just as excited as we are. We’ll just continue to do treatments like we are and pray that Ben continues to do well.

I have a lot more to update on but I’m EXHAUSTED  and I have a crazy “drunk like” little man on my hands.

Thank you to all who kept us in your prayers and thank you to my mom who tackled this adventure with me!