The long awaited day

We made it to Cincinnati late in the day on Saturday and were admitted to the hospital Sunday around 1pm.  I did convince my in-laws to stop for a quick brunch at the Cheesecake Factory before dropping us off and it is a good thing because the rest of the day was a whirlwind of activity and there was not a whole lot of time for eating.  We got settled into our room, answered the 100 questions about Keyan’s past medical history, sorted out medications and TPN orders, and started to acclimate ourselves to this new environment.  Around 4:00, they came in with the stuff to prep her for her test on Monday.  Now, I have no idea why I never realized what would be happening…she has had these scopes before, but I was not mentally prepared for the GI cleansing. (Everything you have heard about prepping for a colonoscopy is bad enough for an adult!)  Here is where things start to fall apart.  Without going into too many details, Keyan is a little girl with CHRONIC diarrhea, so we all figured the prep would not take too long.  Of course we were WRONG!!!  Her body decided to hang onto tall of the fluid it was getting. It was horrible.  We went from fluids into her tube to enemas, and finally at 2am this morning the doctor resorted to irrigation. It was horrible.  She was retching and in so much pain that although the last attempt was certainly not pleasant, it at least got the stupid process over and done with.  We gave her lots of anti-nausea meds and she was finally able to get some sleep. This morning when they weighed her, she was retaining almost 3lbs of extra fluid weight.  Her gut just did not mange well.  I guess that was data in and of itself!\

This morning they arrived an hour early to take her down to the OR and I was in the shower…I know it would go like that but I just figured they would have to weight a few minutes…you learn a lot after five years of this.  When it comes to certain things, a hospital is a hospital is a hospital.  Premiere children's hospital or not, you can never rely on their time schedule.  She charmed everyone in pre-op so by the time I left her I knew they were going to take good care of her.  She was scheduled to have a new set of ear tubes put in, an upper and lower endoscopy, and a new GJ tube put in.  She was away form me for about an hour and a half but Paul’s Aunt and Uncle that live near the area came and sat with me in the waiting room which was so nice.  It has been an awfully long time since I have not sat in those waiting rooms pacing by myself!

In the end, the ear tubes did not go quite as planned.  They were able to put a tube in the left ear but the right eat had a large perforation in the ear drum from reoccurring infections so they couldn’t put a tube in that one.  I was really bummed because that means she will need another procedure down the road to repair the hole and we still will not have a very accurate understanding of her hearing.  The GJ tube was replaced without any problems and the  scopes all looked unremarkable..in other words to the naked eye everything seems normal.  This came as no surprise but was still a little discouraging.  I sat and talked with the doctors for a little while and they said that today was just an information gathering day..tomorrow will be another one form the sounds of it!  We talked at length about the biopsies they are running and some of the tests will not be back for a number of weeks.  It looks like there will some other specialists weighing in which should be helpful and as long as I can remain patient, we will just keep gathering information….answers would be so much nicer but I know that is not the way this works.  She had a rough afternoon with a lot of ear pain and more stomach pain and lots of nausea.  We finally got her to settle down enough to take a nap and when she woke up she was feeling much better. 

So, not a whole lot of excitement, but it is good to be in the trenches getting the work load out of the way piece by piece.  Tomorrow she will have some more tests and I should be talking with some different doctors…I will update again when I get a chance!