Hospital Stay- Day 8 - PFTs

Toe, pre pizza-annihilation, has gained 3 pounds in a week

 Today Toe had his PFTs - Pulmonary Function Tests - to determine whether his lungs have improved enough that we can take him home for the second half of his IV antibiotics. The test is performed by breathing into a tube - a few normal breaths, and then a breath as deeply in and out as you can. They measure the volume the lungs can hold and the speed by which they can expel air. These numbers are then placed onto a continuum created by measuring other children his age with CF. Once he has established a baseline, those numbers are used to determine improvement or decline.

Toe's baseline has been around 116%. When we came in last Thursday, it had dropped to 102%. The drop in function, combined with the fact that Toe had already been through two rounds of oral antibiotics is what put him in the hospital.They wanted to see a dramatic improvement to be able to send us home, and Toe gave it to them. His first time he blew 121%! The next two times he blew 115%. In addition, Toe has gained THREE pounds in our week in the hospital (it's a great feat, except that I have probably gained more :P).

It takes time to get medications ordered and machines to administer them. We still need training to give the IV antibiotics via Toe's PICC line. We'll continue the routine: two antibiotics through the PICC (three times a day) and four breathing treatments a day from home. The plan is to train us and send us home sometime tomorrow.

After our PFTs, breakfast, and a talk with the doctors, the tutor arrived to help Toe with his schoolwork. The guy is great. Toe did not even want to sit up in bed, let alone do school work (a late night last night, poor sleep, and an early morning make a grumpy child). We ended up leaving the tutor to work with him, knowing that things would probably be better without the parental audience. When we came back 45 minutes later, they were working so well, we left for another 30 minutes.

And then the music began. An old friend of ours brought his guitar and J and M settled into the corner with guitar and mandolin and began playing. M said that everyone notices when you walk into a hospital with a guitar. He even was given a free escort. In the elevator, someone asked him if he could play "Piano Man." He said, "Do I look like I can play 'Piano Man?'" I don't know. Cracked me up.

 It turns out it was also music day at the hospital where a group called ??Music Rx?? comes and plays music for and/or with the kids. Sometimes they give guitar lessons. Sometimes they play music as a sing-along. Today, after M left, a woman arrived with a guitar and took requests. We happened to have a few instruments with us, so we had a Beatles afternoon. Toe's first request: "Yellow Submarine." He requested "Hey Bulldog" next, which she didn't know how to play. So instead, we did "A Hard Day's Night" and rounded out the set with "Hey Jude."

 Another breathing treatment, another set of visitors, and now we wait for final evening breathing treatment. Toe is hooked up to the machine, so we're watching movies. I can't remember if this is the second or the fourth time of Monsters U.

We're all worn out. Toe just asked if we could stay up late tonight because it's our last night in the hospital. The question was followed by a giant yawn. That would be an emphatic NO.