Can I Have Some Amnesiac Medicine, Too?!

I don't even know where to start in retelling the story of our colonscopy day... This is really a long story and I don't intend for anyone to read it all...I just need the therapy of writing it all down. This is my one and only journal, you know...

It would have been a lot easier if her appt hadn't been at 4 freaking pm, for starters! She could still only have liquids, and the candy and popsicles ceased pleasing her at about 11am. She couldn't have anything after 1 pm, so I was really trying to get her to fill up. All she wanted was cheese. "Please, Mom. Can't I have just a little, tiny bit?" (holding up her little fingers in a tiny square). It was killing me! Esp. b/c cheese isn't even one of her favorite foods! I did get her to go for drinking some chicken broth, which tasted nasty to me, but she must've been salt-deprived 'cause she did drink a full cup of that.

At 1pm, I was supposed to do her enema, but I was really nervous about it b/c as she did the liquid diet & the clean-you-out drink, she was getting bloodier and bloodier. So, I called the doctor and HOORAY got out of the enema. I only told her this way, way later when it was all over, when she was being grumpy about the whole ordeal... "Hey, it could have been worse..."

I let her choose what to wear...she chose to stay in her jammies all day. I don't blame her, they're pink fleece and very cozy. But, she accessorized with her new pink sparkly shoes, and fingernail polish (fingers and toes), her rainbow braids, and I even let her wear her sparkly dress up makeup. I figured maybe a little body glitter would bring her good luck? It certainly couldn't hurt. She also packed up her new dog, Tumbles, and new TinkerBell snuggie, as well as a sticker book and cd player w/a book to listen to. I'm usually not so permissive, but hey, Mother Guilt is a powerful thing!

We were to be there at 3pm for the 4pm procedure, so we left at 2. It only takes about 45 min to get there, but we wanted to be safe. Good thing, too, 'cause we got lost. Yes, I've been there before. But I had written down the directions off of mapquest just in case, and they weren't right... I did finally get ahold of someone in the office, who told us how to get there. We circled the parking garage several times before finding a spot and wound up being 10 min late.

They were all ready for her, as they'd had a no show. Boy, do those people KNOW what they're doing. They've really got it all down. They were so friendly and good with E. I just wanted to hug them all. They put a numbing cream on the insides of both her arms, and covered it with plastic bandages, then got her set up watching Barbie's "Princess and the Pauper." We talked in muted voices and agreed that some Versed would be advisable, since there was a real possibility of a complete meltdown (even if she couldn't feel it) when it was time for the i.v. So, they gave her some happy juice and she got a little wobbly. Then we walked her across the hall to the procedure room.

The anesthesiologist juggled for her, and she liked "his" Barbie dolls and the jellyfish hanging from the ceiling (we were in the "Finding Nemo" room). I distracted her with her Tumbles dog and they put the iv in w/just a slight flinch from her. She looked at me and said, "I feel so sleepeeeee" and was OUT. I gave her lots of kisses, and then we went to the waiting room.

It was only 25 minutes before the nurse was telling us they were done, but it was a long 25 minutes. I don't know how parents with kids in hours long surgeries do it. I was really fighting the tears just from watching her go to sleep like that. I mean, I'm so glad she didn't have to be awake for it, but it was just creepy... I said to P, who was being very very quiet, "Doesn't that bother you?" and he said, "Oh, yes. That is why I am not saying anything or thinking about it!" and dove into his book. I did take a minute to go over to the window and see the sun starting to set and say a little prayer. I think it mostly went like this, "Please, please, please be with her"

She was still asleep when we went in, but began waking up shortly thereafter with an impressive display of what they referred to as "The Versed Whine." I guess with the normal drug they use, the kids wake up pretty calm, but that versed can make them whiney. She calmed down when they brought her a red popsicle even though she didn't want to eat it. I climbed in the bed w/her and sat behind her for over an hour, during which time they wheeled us back to the recovery room (wheeee! She really got a kick out of that, and I felt a little silly!) and got the Barbie movie going again.

In the meantime, the doctor started going over the stuff with us. She does have ulcerative colitis, which I still have a lot to learn about, but it means she has tiny ulcers inside her colon. Further up (I forget the proper name), it is clear, which is good 'cause that means it's not Chron's. She is the youngest he's ever seen with Colitis. Hooray. What a distinction. Don't know what causes it. There seems to be a genetic component, but they think viruses can trigger/cause it, too. She did have a funky bug in Dec that came after an ear infection...high fevers and then spots. I have a sub-par auto-immune system, so maybe she does, too and that virus was just enough to trigger it?

She is now on prednisone 1x/day for a month, Zantac 2x/day for 2-3 months, and Asacol 3x/day for the rest of her life. She is still on the low-residue diet for a few more weeks, until the bleeding clears up, which he said would take about a week. We follow up in 3-4 weeks (I tried to make her appt today, was on hold for 40 minutes before giving up).

When it was time to leave, we sent Daddy for the car and then she got to ride in a wheelchair (or royal throne, if you prefer) down to meet him. It was funny how much she liked that! She was thrilled to have me sit by her in the backseat, too. She had already eaten a sandwich I had packed for her but said she needed french fries, so we obliged her on the way home.

We picked M up from her friend's house, headed home, and then I went to the store to fill her new rx's. Can I just say how grateful I am that we have 2 medical insurances?! I don't even know what these meds cost! I have to look into that, so we know as she gets older. But, it was a relief not to be in a panic about how much this might cost!

She was begging to go to bed when I got home, and I told her she had to take a pill first. AN HOUR LATER, she finally got it down. It was HIGH DRAMA, I tell you. We tried putting it in yogurt, ice cream, drinking water from a water bottle (which she caught her tongue on and it bled, thus adding to the excitement), drinking water from a straw, tipping head back, getting hints from M. We prayed, we sang, I tried to get her to laugh (by telling her that we used to just wrap up our dog Lucky's pills in lunchmeat...wanna try that?). I mean, it was just ridiculous. Over any other issue, I would have walked away and tried again the next day. But, I couldn't risk setting that precedent, that "If I throw a big enough fit long enough, Mom will back down" 'cause of course, this is the pill she's to take every 8 hrs for the rest of her life. UGH. Of COURSE it only comes in pill form and can't be broken/crushed. I guess that's what happens when it's a 15 yrs and up disease...not a lot of demand for liquid/chewable meds!

She wound up swallowing it by accident, mid-scream as it were. Good grief.

M and I had to be at her school extra early (7:45) for the field trip today, so I left Daddy to give her her a.m. pills. I got 2 sobbing phone calls from her, but she did eventually take that one. I haven't talked to P yet to know how long it took. This afternoon, she actually did it in one swallow! A nurse had called to see how her recovery went and I mentioned the pill trauma and she suggested having her fill her mouth with water, tip way back, and drop the pill in. Of course, I had suggested this to E last night, but it was NOT a good idea then. BUT, since The Nurse suggested it, THEN it was a good idea this afternoon. I think it also helped that I thought to bribe her (WHY didn't I think of that last night?) with a TinkerBell coloring book I got on clearance the other day. Tonight, we tried the same method w/o the initial instant success, then I realized she was flipping her tongue up instead of keeping it flat, and then I realized she was trying to watch herself in the mirror (no surprise!) and thus, not tipping back far enough. I had her turn around and stick out her tongue more and voila! there it went. She impressed me by wanting to do it all by herself. She even had me go out of the bathroom for a few of her attempts. I saw this as a fantastic sign...the sooner she can do it herself the better! This time, she got a princess sticker book I'd also picked up on clearance. (They were going to be Valentine's presents. ooops) Of course, I told her this present gig can't last forever. I guess it will end when my supplies - or my patience or budget - run out!

I have so much to learn about this new twist in our lives. This sounds bad, but I was actually kind of encouraged today when I asked about what foods she should avoid, should I meet w/a nutritionist, etc and the nurse said, "Actually, the biggest trigger is usually stress." That doesn't make a lot of sense here b/c a) she's FIVE and b) she rarely appears particularly stressed...except when taking pills! But, there was a tiny part of me that was secretly glad I don't have to learn a new way to cook! I feel badly about that, and we may find that there are a few trigger foods for her, but I have to admit I'm a tad relieved that I don't have to eliminate milk or wheat... Help me out, here, I'm trying to find a silver lining!