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Saturday, April 19, 2014

A Cecostomy Through the Eyes of a 13 year old. . .

The tube will go in lieu of a 'trap door'
This post is sort of a guest post. . .I'm doing the typing, but it's my son speaking.  He wants to reassure kids who have to go through this and to give some tips on how to make it less stressful for both the patient AND the parents.  It's a little long, but I didn't want to edit anything in case I chopped something that might be helpful to another kid. . .so, here we go:

I didn't want to have the surgery.  I was upset that I had a problem that needed to be fixed but even more worried about having to be in the hospital and have a doctor actually cut me open.  I was afraid I would be awake when the cut was made or that the pain would be too much for me to handle after it was done.

I also didn't like the going to sleep part. . .I hate stuff on my face and the mask they've put on me before for other things kind of freaked me out.

I'm not a wimp, but I was pretty nervous and it was great to have my mom near me.  She helped me to understand what the doctors and nurses were doing or going to do and she wouldn't stop asking questions until I understood everything.  I hope you have a mom or dad who will do that for you, too.  It helped a lot to know that my mom was there to make sure I was okay and that I had her there if I needed anything or was scared.

The first day I had to have an impaction removed from my colon and it went okay.  In the pre-op room there were a load of nice nurses who tried to answer our questions and make me feel calm.  One lady's job was to make sure I understood what was happening and to give me something to do while I was waiting on the rolling bed to go in.  So, I played on an Ipad!

When I came out of that procedure, I wasn't awake, but everyone told me that I was pulling out tubes and thrashing all over the place.  Four people had to hold me down so I didn't hurt myself.  That didn't happen when I had this same procedure before so everyone guessed it was because this time they put a nasal tube in when I was asleep and it must have bugged me because I was trying to get it out even though I was asleep.  I hurt my arm and pulled on my iv and got the nasal tube out.  I also needed to have a breathing tube in for awhile which freaked my mom out!  :)  No one was mad at me when I woke up though. . .they knew I wasn't trying to be a pain. 

Because the nasal tube was out, though, it meant I had to drink a WHOLE HUGE JUG of this nasty stuff that was supposed to have gone into the tube and past my stomach right into the colon.  The nurses were betting I couldn't do it because they've had some grown ups who couldn't.  They tried to make it taste better with some flavoring, but it was DISGUSTING!!  Still, I did it and they were impressed.  If I hadn't been able to, they would have had to put another nasal tube in when I was AWAKE and I didn't want that to happen, so I got that nasty stuff down.  It was supposed to get rid of whatever was left in my colon after the colonoscopy and impaction removal.

I didn't feel bad aside from having to drink that junk, though, and spent the rest of my day in my room watching movies and playing on a WII that they rolled into my room.  There is a whole staff here and a kid's playroom and a teen lounge that is full of stuff to do.  The 'Child Life' people come into your room if you can't get to the lounge, though.  They bring you books and movies and the Wii and board games and crafts and whatever else you want so you aren't so bored.

I still couldn't eat, but I had lots of clear juice and a Popsicle or two, so I wasn't entirely miserable.  My mom hung out with me the whole time so I felt pretty safe and calm.  When it was bedtime, though, and the tv was off and the room pretty quiet (I had no roommate the whole time!), I got to thinking about the operation the next day and got kind of scared.  I threw up and the nurses think it was because of the nasty medicine, but it might have been because I was super nervous, too.

It was hard to go to the bathroom because my iv was in my arm and if I wanted to leave my bed, the iv machine (which was on a rolling pole) had to be unplugged and had to come with me.  It was interesting.  I couldn't just go in the loo, either. . .they had to measure all the fluid going into me AND coming out, which was kind of gross, but I got used to it.  I could either 'go' in a plastic thing in the toilet, or in a kind of jug.  Weird.

Because I was so nervous, I didn't sleep well, AT ALL, though if I ever had to have this happen again, I won't be so scared. . .it wasn't that big of a deal in the end.  But I didn't know that and by morning, I was pretty much a mess.

My mom got to be in pre-op with me again, and did her best to calm and reassure me, but I was still pretty scared.  The doctor who does the surgery came to talk to us, then the doctor who puts you to sleep, then another doctor, and a ton of nurses.  They all explained things, but I think I was too scared to listen.  They didn't make me feel bad, though. . .they understood how I was feeling.  Finally, they gave me a medicine in my iv that made me feel REALLY calm and sleepy.  My mom said I was in the pre-op for another ten minutes, but I didn't remember anything else until I woke back up in my room in the kid's ward with the operation totally done!

My mom said that for about an hour as I was waking up, I kept opening my eyes and asking 'Is the surgery over?!?!  That was fast!!' and then I would fall back asleep.  I did that same exact thing about 10 times before I was really awake.  It made my mom laugh.

I was a little surprised that it was all over, though.  I was VERY sleepy, but didn't really feel bad.  I looked at my stomach and there was a tube coming out of one area, but I didn't feel it at all.  Just above it is a cut that is about two inches wide and has a white strip on it.  It's wider than most people would have because I have a kind of weird colon, so they needed a bit more room to make sure they had the tube in the right place.

It was strange to not feel anything from the tube, but I was a little sore where the cut was. The nurses made sure that I had pain medication, though, so it wasn't really that big of a deal.  The only time that I really noticed it was when I tried to bend at the waist and get out of bed.  It hurt then, but not so much that I couldn't handle it.

That night I was pretty sleepy and just watched movies and stuff.  I still wasn't allowed to eat real food, but I did get to have a Popsicle and juice.  Late in the evening I got some crackers, too.  They had me take a short walk but other than that I was just resting.  I slept pretty well that night and the nurses gave me pain medication whenever I felt uncomfortable.

The next morning I got to eat as normal and I was HUNGRY!!  Four days with just juice and clear liquids was HARD.  They had me start kind of slow to make sure I didn't get sick, but I felt great eating again.  My stomach was still a little sore, but I still had pain medications and it wasn't too bad.  I didn't even notice any pain when I was laying down or sitting. . .just when I was trying to get myself up out of bed.

The nurses check all my vitals (temperature, heart rate, blood pressure, etc.) regularly and they've all looked good. We had our first 'flush' today, too. . .which was easier than I thought it would be.  The stuff that goes in is just really a kind of salty water.  It was hung in an iv bag and only took 5-10 minutes to go in, though it wasn't as much liquid as I will be having in a few days.  I didn't feel it going in, but it didn't take long for it to start working!

And that was really it!  Now I just need to have another flush or two and prove that eating doesn't make me sick (it doesn't!!) and not get any infection and I will be able to go home!!

It hasn't been that bad!


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