The Clean-Out

The office of the wizard of CVS finally called and would like to see us! This is the good news. We hadn't had an abdominal x-ray or ultra sound in about a year and the Wizard wanted those to happen before we went up to see him. So, we did. Here we are waiting for Ellie's "tummy x-ray" last week. She found this super cool app and we were having a lot of fun playing with it... (I think it's tocatailor.com)





On Monday I was feeling good. I was finally feeling like myself again (post flu and bronchitis) and both kids have been healthy and quite happy lately. I had this moment where I stopped and noticed how good things were. And mostly I thought...

It's been at least 3 weeks without stomach complaints or an episode. This is a big deal and I should pay attention. What is different? What is going well? She is sleeping pretty well, albeit in our bed. Flu and cold season is probably heading out, no encounters with virus'. Perhaps her anxiety about 1st grade is passing? Hmm, what else?

Colin snuggles w/S

Then I thought maybe I should blog about things being really good. I don't want this blog to be filled with negativity, perhaps a post such as-- Hey ya'll, things are great!-- was in order. But I didn't, because when things are good, when life feels generally sunshiny, there "isn't time" to blog. When things feel generally a-o-k and Ellie seems to feel good, then I am just busy being a mom, a sister, a daughter, a wife and a friend. In the last week or so, my brother (who has been living with us for a few months while he transitions here for work), his girlfriend who also moved here from far, far away, well for a variety of reasons she moved in with us too. We love her, this was good news for everyone. We also had Ellie's first-ever dance recital and it was a blast and she did great (and she had NO episode before or after--huge success!). And all the other little glorious moments, like Colin's first-ever shower (a big deal for a 3-year-old!). When things are generally sunshiny, I don't feel that pull to blog or journal or track (food, calories, episodes) or any of that. I feel a pull to just enjoy and keep up!

Giggly, happy dancer

 

"Mommy, I a BIG boy now!"

Anyway, on Monday, a few hours after my big ah-hah moment, I got a call from the nurse at Ellie's GI doctor's office. I am not a huge fan of this particular nurse and this phone call solidified my, mmmmm, well my desire that she not be a nurse in that office. She quickly said that the x-ray from last week showed that Ellie was filled to capacity with "stool." Her intestines were as full as they could be and a total clean-out was a must. Without giving me a second to digest this she said, "So if you can get a pen and paper I will give you the details of what the doctor would like you to do."

-buy 2 bottles of Miralax, one is for the clean-out, one is for maintenance afterward.
-buy a 64 ounce container of gatorade
-buy a package of Ex-lax, the chocolate chewable kind
-poor one whole bottle of miralax into the gatorade, let disolve, have her drink 8 ounces/30 minutes until 75% of it is gone.
-after that have her take 2 of the chocolate Ex-lax chewables

And then she said, "Basically we are going to give her the worst diarrhea of her life. Our goal is for her to have diarrhea until it comes out clear. It will probably take one or two days."

And just like that our conversation was over. And the kids were still playing in the park and the warm summery sun was out and I had to give my daughter "the worst diarrhea of her life."

No stomach complaints, no episodes, happy kids, happy me... GAH!!

Resistance came fast and hard. I called my Mom and a friend, "I can't make her drink that much, that quickly! She will puke. I could hardly drink that much that quickly for my colonoscopy last year and I am not a skinny 6-year-old! And she seems fine. She hasn't complained. Is this really necessary?"

The next day I called her general pediatrician. I have developed a deep sense of respect for this doctor and trust her opinion as a physician, and because she is a mother of three young kids. I do trust her GI doctor, but when thrown for a loop I've learned it's ok to look for additional opinions. She looked at the x-ray and agreed that it was pretty bad, worse than last year's and last year's was in the bad range. She said all GI doctors have different ways of doing the clean-out and that it was perfectly fine for me to go much more slowly than the instructions this nurse gave. We came up with a slightly altered, more gentle plan. She affirmed what I've thought for a long time, that Ellie's chronic constipation is probably a big trigger for her CVS and that just like tending to Ellie's sleep issues we should also tend to this chronic constipation.

UGH.

So, once again I had to talk to Ellie's teacher about her missing some school this week (again and again and again--all the hard aspects of missing school should be a post of its own), and this is how E spent her afternoon:

"ELLIE...TAKE ANOTHER DRINK!"
"Hey El, can you do 2 big drinks for me?"
"I know you're full, but how about 1 HUGE drink and then we'll take a break?!"
"I am so proud of you! Can you take another 3 big drinks?"
"HEY ELEANOR...ARE YOU DRINKING??"

We got through 32 ounces of lemonade/water and half of a bottle of miralax and one Ex-lax chewy thing. So far she only pooped once, so I fear it could be a long night...or maybe it won't kick in until tomorrow...or maybe she will be so stuffed up it will trigger an episode tonight... or...or....

Once again today I am reminded of what a trooper Ellie is. When she needs to be tough, she is really tough and amazingly positive. I am also reminded that I am in charge (ah-hem, sorry Brian) WE, we are in charge and if something feels uncomfortable (like trying to get my kid to drink 8 ounces every 30 minutes) I can speak up and use my resources to find a better plan. I am reminded of how hard CVS is on the school aspect of a kid's life and why it is hard to explain that even though she hasn't actually vomited for a few months, she has still missed a bunch of school. I am reminded of how great my friends and family are (supportive, listening, considering, affirming, asking if we need anything) and I am also reminded of how hard it has been to cultivate relationships this year--so much of my time is spent worrying about Ellie, calling about appointments, going to appointments, catching up on lost sleep. None of it has been really horrible, but it's hard to maintain friendships during this sort of "busy." And in the same vein, I am reminded that I am a graduate student who hasn't opened her books in about a month.

One day at a time, one day at a time.