Wow, what a night, what a cast!
Today was interesting! We walked in the parade and advertised for Hairspray! My uncles brought the music/sound system and we jammed out to "You Can't Stop the Beat!" I enjoy parades, expecially performing in them. I have been a mermaid, a game show contestant, and a 70's Disco Dancer (in the Riverfest Parade) and a Christmas Mouse, elf, etc (in the Princeton Christmas Parade). I love parades!
However, the rest of my day wasn't so LOVELY!
Lately, I have been talking about my stomach tube, but it just has been bothering me a lot (like hurting). And tonight during our rehearsal warm-ups, It felt weird all of the sound and I realized it was leaking a lot. Uh Oh! I run back and realize the balloon of it had collapsed. This happens once in a blue moon, like 3 times to me (that I'm aware of). Usually they slowly deflate. Nope. Tonight my button (stomach tube type name) collapsed! It is held in by a balloon inside my stomach. The ballon also keeps it from leaking (sealing the area around the tube). So if the balloon pops...yipes.
Needless to say, by the time I saw what was happening it had soaked through gauze, bandaids and my tank top!
I immediately ask people to find me gauze. One person had some in their car (but it was thin, I needed thick Gauze pads). So another girl in the cast helped me find a first aid kit and helpd me tape up some gauze...
But before long it soaked through it too! UGH!
I realized to keep it from leaking onto my costumes I couldn't drink anything tonight. AND I'd have to change the gauze tape out every 20 mins!
I was so thankful that people jumped in to help when they saw what was going on! And especially my carpool. One of them drove me to a Walgreens during intermission to get more gauze, and they kept checking in on me. By the time rehearsal ended my skin was pretty sore from all the tape and leaking stomach acid, etc. So I just slept the whole car ride back to the carpool destination. Which is when we all realized I was the driver from that point on.. I was still waking up and pretty uncomfotable; but, I would have drove. However, one of my carpool buddies offered to drive my car (which gave me time to wake up). He drove until we reached the house where I split off from carpooling and drive the rest of the way to my town/ house!
So here I am sitting, typing about my day, doing my therapies. Since my tube is messed up I don't have to make my feeding tonight (It will be nice not to make it, since I'm tired)! But tomorrow, being behind all those calories....hmmmm... thank goodness for adrenaline that comes with performing! :-)
Love Hairspay, but even better than the play itself and the music, is the awesome cast! :-) My carpool and cast really helped me out tonight admist my crazy chaos of a life that I'd call "CF spicing it up: no dull times, here!"
Today was interesting! We walked in the parade and advertised for Hairspray! My uncles brought the music/sound system and we jammed out to "You Can't Stop the Beat!" I enjoy parades, expecially performing in them. I have been a mermaid, a game show contestant, and a 70's Disco Dancer (in the Riverfest Parade) and a Christmas Mouse, elf, etc (in the Princeton Christmas Parade). I love parades!
However, the rest of my day wasn't so LOVELY!
Lately, I have been talking about my stomach tube, but it just has been bothering me a lot (like hurting). And tonight during our rehearsal warm-ups, It felt weird all of the sound and I realized it was leaking a lot. Uh Oh! I run back and realize the balloon of it had collapsed. This happens once in a blue moon, like 3 times to me (that I'm aware of). Usually they slowly deflate. Nope. Tonight my button (stomach tube type name) collapsed! It is held in by a balloon inside my stomach. The ballon also keeps it from leaking (sealing the area around the tube). So if the balloon pops...yipes.
Needless to say, by the time I saw what was happening it had soaked through gauze, bandaids and my tank top!
I immediately ask people to find me gauze. One person had some in their car (but it was thin, I needed thick Gauze pads). So another girl in the cast helped me find a first aid kit and helpd me tape up some gauze...
But before long it soaked through it too! UGH!
I realized to keep it from leaking onto my costumes I couldn't drink anything tonight. AND I'd have to change the gauze tape out every 20 mins!
I was so thankful that people jumped in to help when they saw what was going on! And especially my carpool. One of them drove me to a Walgreens during intermission to get more gauze, and they kept checking in on me. By the time rehearsal ended my skin was pretty sore from all the tape and leaking stomach acid, etc. So I just slept the whole car ride back to the carpool destination. Which is when we all realized I was the driver from that point on.. I was still waking up and pretty uncomfotable; but, I would have drove. However, one of my carpool buddies offered to drive my car (which gave me time to wake up). He drove until we reached the house where I split off from carpooling and drive the rest of the way to my town/ house!
So here I am sitting, typing about my day, doing my therapies. Since my tube is messed up I don't have to make my feeding tonight (It will be nice not to make it, since I'm tired)! But tomorrow, being behind all those calories....hmmmm... thank goodness for adrenaline that comes with performing! :-)
Love Hairspay, but even better than the play itself and the music, is the awesome cast! :-) My carpool and cast really helped me out tonight admist my crazy chaos of a life that I'd call "CF spicing it up: no dull times, here!"
So what exactly does it mean when your stomach tube balloon deflates? Are you looking at surgery to repair it or is there any easy way to re-inflate it?
ReplyDeleteOh, I don't have to have surgery. I just put the new one in myself. Its taking the old one out that I hate (My roommate Stacey, used to cheer me on). I don't have an extra right now in my med supplies. So I have to wait for it to come in the mail. I'm going to see if it had a leak in the balloon and if I can just re-inflate it over and over...LOL No worries :-) Life is still good. [Although, I'm STARVING today..lol (lack of night feeding).
ReplyDelete