Day One

Ok...so it is 11PM and I just finished eating dinner and am heading out in 15 minutes to get Jed from the airport.
Today was supposed to be mild, a few test and a contrast enema that the Dr. needed before our appointment tomorrow. We were supposed to be there for about 2 hours. Well it was 10 hours instead. It has been an emotional rollercoaster. Madison did great with the test and the contrast enema was a little difficult, however, she did good ( I guess she has no choice since there were 5 adults holding her down). We were done with the testing and getting ready to go home when Madison started vomiting. No big deal we thought...she did just have 2000 Ccs of fluid injected in her belly.
Long story short since I only have 10 more minutes! After sitting in the bathroom of radiology for 2 hours with continuous vomiting they put her on a gurney and ran down the halls with her saying something about “she is having a fluid transfer”(?) We ended up in the ER department and her color was WHITE and she was totally out of it. It was sooooo scary. I was sobbing totally unsure of what all was happening. 5 hours later and lots of IV fluids and we were on our way. She probably threw up 25 times (including once as they were putting the IV in.) They basically told me that her body could not handle all of the fluids that were added to her body (messes up the electrolights?) and it can start to put some of your systems in shock. It is interesting because something like this happened last August when she was in the hospital in Freeport – we thought that it was a coincidence but after today I guess that we know it was not. We will have to see what we can do in the future to make sure we avoid these scary situations! The radiologist said that this has never happened to her in her practice of doing enemas.

Maddie is sound asleep and totally exhausted. We need to be back at the hospital by 7am to have an xray to see what her belly looks like after all the trauma today. We will then meet with Dr. Levitt for the first time ever. I am so anxious as to what he will say. The radiologist did say that she has “a huge colon, which Dr. Levitt will talk to you more about” The tests did show that she is completely impacted almost all the way to her stomach. Not good at all. Some did move today after the tests but she still looks about 6 months pregnant.
I am exhausted and will be ready to get answers and the agenda from Dr. Levitt tomorrow. We really do not know what the plans are until he decides on the severity of her case.
I know that many of you do not know anything about what her condition is. I will try to add more details in the next few days but in a nutshell:
Her colon is not capable of moving stool at all. She is almost 6 and in diapers because she has to be on medicines that loosen her stool so that it can not “hang out” in her megacolon. She has lost all sensation of knowing when to even go to the toilet because of so many years of overstretched bowels. A web address that you can click on for the Cincinnati clinic that shows a power point on this condition is :
http://seraph.cchmc.org/mediasiteex/viewer/Viewers/Viewer240TR.aspx?mode=Default&layoutPrefix=LayoutTopRight&layoutOffset=Skins/Clean&width=800&height=631&peid=43791c8b-1c9c-45df-b435-fa19b2881141&pid=4e4aa0e2-2ff3-40fa-aa56-b2dc2b1fa150&pvid=504&mode=Default&shouldResize=false&playerType=WM7&pid=4e4aa0e2-2ff3-40fa-aa56-b2dc2b1fa150&playerType=WM7
I appreciate all of your prayers and I will do a better job at updating once I have a chance to breath!
Love to all,
Nikki
and by the way... ask Danielle about the near death of my youngest! It involves an outlet and a metal barrette!! She is getting better training for her baby to be than she knew was possible!!