Monday, May 13, 2013

Our Stay at Cincinnati Children's Hospital

I just have to start by saying the entire staff was exceptional.  Meeting Dr. Kaul and his nurse, Jackie, is something I will never forget.  We've spent the last nine months trying to figure out what's wrong with Levi's bowels, and most difficult, trying to manage his pain, sometimes failing miserably.  I was excited to get to Cincinnati and meet the motility team, but they far exceeded my expectations.  It was immediately apparent that they love what they do.  When we met them in clinic, I was nervous, but the moment they stepped into the room I not only felt completely at ease, it was also an enjoyable experience.  They listened to me and understood everything I was saying.  I didn't have to keep repeating the same thing.  I didn't feel like an overly paranoid mom.  When I left that office, I felt better than I had in a very long time.  What an answered prayer!

The first two days Levi had outpatient testing which included a gastric emptying test that showed his stomach empties slowly, and a barium enema that normally would last around an hour, but kept us there for four, and it took him eight hours to eventually void it.  I was not surprised by this, considering how difficult enemas had become for him and that's the reason we stopped giving them. Wednesday we went inpatient so he could have the IV placed and get ready for the procedures the next day.  Levi was admitted to the neurosciences/trauma floor, which I thought was odd, but I guess the GI floor was full and he was placed there because of seizures and the Ketogenic diet.

Thursday afternoon he was taken to surgery where they performed a colonoscopy with biopsies, endoscopy, placement of manometry tubing, and more.  The poor little guy  had tubes coming from his rectum, g-tube opening, and stoma.  It was difficult to hold him, and he had to remain in bed for the testing, so Jackie suggested an adult bed for him so we could lay with him.  That was much better!  The tube that protruded from his stoma was sutured to the plastic on the colostomy bag so that it wouldn't come out, so that made it difficult to close the pouch.  The poor nurses on our floor had no idea what to do with it, and so we were moved to the GI floor.  They must have just had a room open up, because we had to wait a long time while it was being cleaned.  Levi was screaming in pain off and on, he couldn't have any pain medication other than Tylenol, and he could have nothing in his stomach.  We waited a very long time for IV Tylenol because it had carbs, which is contraindicated for the Ketogenic diet.  I was so angry I yelled at the poor doctor.  I definitely would rather a few breakthrough seizures than leaving him in pain. In her defense, the last time she'd seen him he was sleeping, and she was trying to find something to manage his pain without causing problems with the diet.  At this time we finally moved down to the GI floor.  It was as if Levi knew they were experienced that this sort of thing, and would take care of him.  His nurse, Jenette, started talking softly to him and set him at ease.  He relaxed and fell asleep, and he still hadn't had Tylenol yet!  She and the PCA worked for a long time modifying ostomy bags to fit around the tubes so the leaking would be minimized.  What a sweetheart she was!  We loved her immediately! The rest of the night went fairly well, with a bit of fussing off an on.

Friday was the big day!  Jackie came in bright and early, bringing sunshine and happiness with her.  She hooked his tubes up to a computer.  It was interesting to see that the readout looked somewhat like an EEG.  The testing took all day, since they were testing three different areas.  At one point, she gave him an eight ounce feed over gravity that emptied pretty quickly.  Thirty minutes into the feed he gagged, and I was going to have it stopped, only to find out the bag was empty!  He took eight ounces in less than an hour!  This little guy has been on feeds of just over an ounce an hour for the last few months.  I was amazed and thrilled!  This means the return to bolus feeds (that I will start today) should go very well!  At the end of the day, when the testing was complete, Jackie pulled all the tubes out and we could see the relief on Levi's face.  That must have felt strange!  The stoma nurse, Anne, came in again with supplies.  She had shown us a different type of bag that I like so much more than what we were using!  Our GI nurse, Mindy, was outstanding!  The discharge papers were waiting for us as soon as the testing was done!  So we took our happy selves off to the Radisson and enjoyed a relaxing dinner.  Patrick came in about nine to pick us up.  We struck out for home after a lovely breakfast and were home that afternoon.

This trip was such a blessing!  I'd like to say a huge thanks to Dr. Kaul and Jackie, our nurses Jenette, Andy, Lindsey, and others whose names I can't recall, but whose faces and kindness I will never forget, and Dr. John and Dr. Maggie.  Now we wait for Dr. Kaul and Jackie to review the information and let us know what they find.  We will hear from them sometime this week.  I'm praying they find the exact cause, and that it's a simple procedure to fix!  Many thanks to all of you who are praying for Levi!!


  1. I was just wanting to say hi. I know I don't comment but I check your blog every day so I can keep up with Levi's progress. We love you and are thinking of you guys always.

    Jenny (and all the rest of us. Lol.)

  2. Hi Jenny! I'm so glad to hear from you! You know, God really works in mysterious ways. I didn't even know you wrote a blog, so I stopped in to check it out, and what you wrote recently about feeling inadequate is exactly what I've been feeling today. Your words make me feel better, because I know you're an amazing mom, and maybe this is just something all moms go through from time to time. I love you all, too! Hope to see you soon!!