Background

Welcome to Kylie's blog. My goal in this is to make it easier to update all of you. For all of you new to Kylie's medical situation, let me give you a little background...

Kylie woke up with a fever and not feeling well on Wednesday morning, November 19. She had some GI symptoms, so I assumed she had a little GI bug. By Friday, she was completely listless and lethargic, to the point she couldn't support her head well on her own. She was very pale, had not eaten since Tuesday, and was still running a fever. I just sensed something was very wrong. I got in with our pediatrician on Friday afternoon and they immediately admitted us to Children's Hospital. She was extremely dehydrated but they were also very concerned with the source of her fever.

When we first arrived at the hospital, they did a blood test to test for CRP (c-reactive protein). They determined that she had a non-specific type of inflammation occurring somewhere within her body. For this test 0-1 is in the normal range, 1-7 is the range for a general infection but Kylie was way beyond this at a 27. So, we knew something was very wrong. They attempted to do a lumbar puncture that evening which was unsuccessful. However, they repeated it the following morning and succeeded. We were so grateful to the Lord that they ruled out meningitis. In the next couple days that followed, Kylie's situation posed a real mystery to all of the doctors. She did not demonstrate any improvement with the fluids and the non-specific antibiotic they put her on. Different teams of doctors began following her including: infectious disease, nephrology, gastroenterology, and pediatric surgery. Doctors began looking into the possibilities of:
- cystic fibrosis manifesting itself with gastro-intestinal symptoms
-viral panel to include: mono, epstein barr virus, CMV
-giardia

On Monday the 24th, Kylie had an ultrasound of her abdomen. The ultrasound provided us with a piece of this puzzle. The ultrasound concluded that Kylie has severe colitis or inflammation of the large bowel and a lot of fluid distension. We also know that Kylie has tested positive for a bacteria in her intestine called Clostridum Difficle (c.diff). They currently have her on an antibiotic for the c.diff called Flagyl. It can take up to 10 days for this to help her from what I understand.

Some of you know that Kylie has had some GI issues ever since she was born. She has always had a very distended tummy and has always had trouble passing stool. For so long, I just thought it was a big toddler tummy. This past summer, it worsened and we went to see a GI specialist. She had numerous tests and all of the tests came back normal. The tests concluded that everything in her digestive system is normal anatomically. They also did not find any inflammatory bowel diseases or allergies to foods. The GI doctor felt she tested for everything she could possibly test for. So, due to her underlying GI problem, it makes everything that is occuring now very complex. Are these two problems related? This is our big question. It seems that more doctors are believing that they are.

Kylie's pediatric surgeon thinks that because her colon has not been functioning properly, she developed the c.diff bacteria. The lack of motility caused an overgrowth of bacteria. Kylie's poor little tummy is just massive. She seriously looks like she is 9 months pregnant. Her pediatric surgeon has said that if her intestines do not start healing and she does not improve, he will have no choice but to do a temporary ileostomy.

We also have heard that Kylie's sweat test for cystic fibrosis, the viral panel, and the test for giardia have all come back NEGATIVE.

Last evening, the pediatric surgeon put a central line in so that Kylie can receive nutrition. It has been over a week since she has eaten anything! We are so thankful that the procedure went well!