We were blindsided

I haven't even been keeping up with my blog reading much less writing.  All has been honky dory until last Friday around 4am.

Victoria came into our room around 4am to sleep with us.  This is not unusual.  What was unusual was the whining, whimpering, complaining little girl in our bed talking about her belly is 'scratchy'.  It's what she says when she thinks she needs to poop and perhaps a little uncomfortable.  So I rub her belly and try to comfort her until she falls asleep again.  Which she does not too long after 2 big farts.  I'd feel better too if I'd farted like that.


*TMI alert* I could get graphic about poop, enemas, and more.

Friday morning when we get up for the day, Victoria is pitiful.  So we call the pediatrician and ask if she needs to come in or what.  Nurse says to keep an eye on her if she's not perking up and playing in a couple of hours to go to the children's hospital.  After a little while, Victoria perks up and we think all is well.  Throughout the day she'd periodically complain of belly pain and curl up and be pitiful.  Then she'd bounce back like nothing ever happened.  We figured she was brewing a good poop - perhaps a little hard and she could feel it rumbling a bit or something like that.  She'd had a big soft poop the night before - we thought we'd miscalculated enzymes for a meal. And she'd pooped nearly every day that week so we weren't thinking about a blockage.

Although she acted well on Friday as the day wore on she didn't eat particularly well.  Again not totally out of the ordinary, but skipping milk Friday night was.  Saturday when she got up she didn't perk up so we called the CF clinic to see if they thought something different.  GI doc on call said to give full dose of miralax on Saturday and again on Sunday.  If still no poop, call CF clinic on Monday.  About an hour after we gave her the miralax - in nearly straight juice to ensure she'd drink it - she vomited it all up. While we got cleaned up, Hubby cleaned everything else up.  Miralax on an almost empty tummy not so good.  We had more cycles of vomiting and cleaning and laundry.  We call the CF clinic again this time talking to the CF GI doctor.  He said to take her to the ER at children's hospital.  We'd already been expecting that, but hoping for something else we could try at home.

We pack up the big diaper bag, grab our books, drinks, and load everyone up.  On the drive there we hit traffic due to construction.  While sitting in said traffic, Victoria vomits in the car.  She won't lean forward to clear it out or spit.  I didn't car where it went so much as long as she wasn't swallowing it or breathing it.  I pull off to the side of the highway so Hubby can get in the backseat and clean her up while I get us to the hospital.  Trying not to have a panic attack at how long it takes us to get there - about 1.5 hours - not quite.

Happily the waiting room was empty and we were triaged right away.  Then wisked back to a private exam room.  It didn't take very long to see a nurse and a doctor. Who asked the same questions one after the other - when they were in the room together!  Doctor starts to say she didn't think they were going to bother with an x-ray but just try to get things cleared out. Next doctor says we'll do an x-ray just to check things out. Caught the error when they started setting her up for a chest x-ray rather than abdominal.  Took a bit to get the orders changed and for it to appear on the tech's computer and Victoria fell asleep on the x-ray table. We had to wait quite a while for results.  Doc says her colon is full - quite remarkable actually.  So nurse brings a fleet enema. Victoria did okay with it. 50 minutes later and no results - here comes the soap suds enema. Or was that when the doctor tried to manually remove the poop.  That was no fun for anyone either.  It was awful to help hold her down while they put that one in while she screamed 'take it out!'.  That was a lot of fluid!  2 hours later and no results doctors say she's really impacted, but doesn't use the word obstruction.  So we're still a little blindsided when they say they're going to admit her.  While waiting for admission, she has a big poop.  Well lots of liquid, but not lots and lots poop.  But not enough to keep out of the hospital.  But enough to avoid having an ng tube placed to pump huge doses of miralax right into her stomach.  We get to our room around midnight.  After about 5 straight hours of watching Sprout in the ER, Victoria and I don't have much trouble getting to sleep after everyone get settled 2 hours later.  Waking every 2 hours to call the nurse to reset the IV sucks.  But when they say they'll be right there - they mean it.  30 seconds tops.

Sunday morning Victoria's perked up a little from the IV fluids since she didn't keep anything down all day Friday not even the popsicle in the ER.  Nurse came in with another fleet enema at 8:30am.  Who wants to start of their day with a nice enema?  Not Victoria.
She ate a fairly good breakfast/brunch around 11 am - blueberry muffin, bacon, & juice. No results from the enema.  Just 'peeing' from her bottom as the liquid comes out alone.  Now we're worrying what's next.  We finally see the CF GI doctor.  He grumbles that the ER didn't call him like they should have, and didn't do what he wanted them to do.  So now we'll do what he says.  Another enema - but with contrast dye which can go further up the colon and bring more water in and hopefully move things along too.  He didn't mention x-rays, but we did them.  Perhaps he did and I didn't here.  I was thinking about my daughter enduring for 4th enema in less than 24 hours.  We take her to have this HUGE fancy enema and since they were taking so many x-rays I opt to stay in the hall.  I sat in the chairs at the end of the hallway 40+ feet away and cry &f pray because I could hear her screaming.  Where's Mommy? I want Mommy!  Take it out! Take it out! Ooooowwwwww!  I would have gone in to help if I didn't know they'd already locked the door and wouldn't be able to open and let me in too.  Hubby says for all her wailing she held fairly still while they administered the enema, but after when they wanted to pose her for more x-rays she fought tooth & nail.  Unlike all the other enemas she didn't hold this on in so well.
She pooped on the potty for the first time!  She was held there and had virtually no control and cried the whole time.  Hubby avoided getting poop on him, but it was an ordeal getting her cleaned up.  They let me back in to hold her and she's leaking out the diaper and on me too.  We get her cleaned up again and now they want her to hold it in to make it easier for the ultrasound. What ultrasound?  Not part of the original plan so that's not good.  X-rays confirm her whole colon is pretty darn full of poop.  Doctor shows us the x-rays and where it just stops.  Says he suspects intussusception .  Where part of the small intestine get sucked up into the large intestine kinda like the way a telescope collapses. It's not really uncommon in young children, but it's not really CF related.  Says there are two ways to fix it.  Another enema - this one with air to try and move it.  Or surgery!

Says the enema we did although not air was still pretty forceful and it didn't budge at all.  Not sure if surgeon will want them to try another.  I was already asking about sedation for another enema.  He says it could slow things down and not the best for this.  Oh boy.  Now we get to go back to our room and get a bath and clean clothes for both Victoria and me.
I get Victoria cleaned up and hand her off to Hubby.  While I'm still in the shower someone comes to the door.  Matt asks if they can come back in a few minutes until I finish showering and get dressed.  They say no.  So I'm asking for at least clothes in the bathroom.  This is my freak-out moment.  When the surgeon won't even wait 5 minutes!  Our surgeon - dubbed the best by some of the other doctors the next day - says our radiologist is one of the best and if he couldn't get it to budge with the enema we had the air would just be a waste of time and unpleasant for Victoria. When was her last meal they want to know? About 4 hours ago. She needs surgery - today.  I give consent and away the surgeons go to prepare and wait for the OR to be ready.  Hubby and I have a little freak out time and call the family to let them know what's going on.  All too soon she's being pushed to the OR.  As we go by the nurses' station one of the nurses practically cries out 'What are they doing to that little girl now?".  By the time we get in the holding area Victoria is goofy from the med they gave her to help relax and reduce anxiety - why weren't they offering that to the parents?  About 3 hours after that enema she's in the OR.  Hubby and I are shown the waiting room.  Instructed that if the phone rings, it's for us.  Kinda weird to have the waiting room all to ourselves.  So we go off to eat dinner in the cafeteria.  We need to eat and it gives us something to do.  When we finally get back to the waiting area we don't have long to wait - about 25 minutes.  Surgeon comes in right about his time estimate if all went by the book. 

He brought pictures.  He says not only was the small intestine sucked up but also the base of the appendix.  So he removed the appendix.  A 2 for 1 special!  We no longer have to worry about appendicitis.  Says her appendix is very long - just like mine.  My OB/GYN said mine is more like a snake than a worm.  Most people's are a quite a bit shorter.  Over all a nice success.  When they bring her back to her room the nurse says that they gave her a little lung washing with saline and a lot of suction while they removed the breathing tube.  Said all the mucous was white - yay.  No ugly junk there.  I wonder if they're going to check it for bacteria? - doubt it. 
And because of the staples he put in at the base of the appendix she won't get any more enemas.  Said he didn't want to try their strength so soon.  Yay for that.  But he doesn't want her to have anything to drink until morning.  Ugghh she hasn't really had anything for hours before and now nothing after either?  What a bum deal.

More later....