Sleeping Beauty

There’s a lot to catch up on since my last post. After Nora’s clean out from the colonoscopy prep she had a really good couple of weeks with hardly any tummy aches. Then they returned with a vengeance so then it was time to go to plan B and try the Flagyl, which is  a strong antibiotic to try to get the overgrowth under control. She seemed to handle it fine at first with no additional intestinal aggravation and she even felt better for a few days.

But then after being on the Flaygl for 4 days she became extremely tired and was taking longer more frequent naps. It’s usually hard to get Nora to take one short nap a day let alone two naps for 2hrs or more. She also wasn’t wanting to eat or drink very much. We were getting concerned but from what we had read and talking with her doctors we contributed it to the antibiotic itself on top of the dying bacteria in her system making her more tired. But then last Thursday she fell asleep at 5pm and didn’t wake up until 8am the next morning but only long enough to come out to lay on the couch to fall right back asleep again. At this point we were extremely concerned, had doctors on the phone and her home health nurse on the way when she pooped a huge puddle all over herself and was so out of it she didn’t even wake up. So off to the hospital we go. Thankfully her doctor called ahead to pre-admit her so we didn’t have to go through the ER and went straight to a room and hooked up to IV fluids.

Her blood pressure was low and her respiration was up but no fever. While waiting on her labs to come back we were suspecting d-lactic acidosis since she was not able to be awakened and she had a few dizzy and stumbley spells the day before. With all of the bacteria dying off in her intestines and poor motility not moving it out properly, toxin build up seemed like a suspicious culprit. Her labs came back showing she had a low CO2 level which is usually a sign of dehydration. After being on hydration fluids for a few hours Nora finally woke up after sleeping for pretty much 21 hrs straight and her vitals were getting back to normal. Her blood acidic level was normal but d-lactic acidosis wasn’t ever confirmed or ruled out since she never passed stool after the lab orders for cultures were written.

Not being able to wake Nora up was incredibly scary. Even though she was getting TPN during those days preceding this episode her little body still got very dehydrated very fast.

But after she awoke and got to feeling better she strutted her stuff up and down the pediatric floor hallways getting lots of “you’ve gotten so big!” from her familiar nurse buddies. We never like to have to take her to the hospital but it’s always nice to be greeted by smiling familiar faces and luckily Dr. Patterson, Nora’s NICU doctor, was on call while she was there and it’s always nice to see him. Ironically Nora chose to watch Sleeping Beauty all on her own accord from the hospital movie library during her overnight stay and has become quite a fan of the movie.

So the next morning she was discharged with IV fluids to supplement until she got her fluid intake back on track, orders from her GI doc to stop the Flagyl and a plan to have a barium enema done in a few days to confirm that nothing structural was going on causing her abdominal pain. As soon as she recovered from her dehydration episode and started eating and pooping regularly again her pain returned. As much as we hated to put Nora through having a barium enema it was time to try to find more answers.

The barium enema showed no concerning loops or partial obstructions thankfully but what it did show is that her entire large intestine is wider than it should be instead of just a dilated section. I think I will stop here since I feel I have already written a book and we are still waiting to have more in depth conversations with her GI doctors about the possible cause and solutions.

But the last 4 weeks since the last Nora update haven’t been all bad. Nora’s Uncle Kia got married to a wonderful lady named Catherine and thankfully Nora was feeling up for the job as their flower girl on the day of their wedding. She had a great time and took her duty as flower girl very seriously.

and kept Catherine’s bouquet safe while listening very intently to their vows….

Nora even met some new friends and had a blast sharing butterfly wings and dancing it up with them.

Kia and Catherine’s wedding day brought them a sign of good luck with a rain shower and of course Nora couldn’t resist splashing in the water puddles. Although she did know to raise her dress before jumping in. 🙂

Congratulations Kia and Catherine!
We love you both very much.