Yes, I know. It has been nearly a year since I have updated all of you. And a crazy one at that! Austin had just been born when I last posted. I can hardly believe that he will be a year old in two more weeks. I can't tell you how many times I contemplated updating Kylie's blog in the past year. Many of you are aware that ever since the removal of Kylie's colon a year ago, she still struggles to this day with major abdominal distension. In the midst of my frustration and discouragement I guess I didn't know what to write or even feel like writing. Doctors can't figure out what's wrong. Same problem day after day. It gets old and boring. Why should I bore all of you? Well, we have some new findings. And so I have a reason to update you all.
Towards the end of the summer, we made a switch from seeing the GI doctor at Boystown to the GI doctor at Children's Hospital. We felt we were going absolutely nowhere with the doctor we had been with and wanted a second opinion. So, as of lately we have had numerous appointments with Dr. Zapata, Kylie's GI doctor at Children's and with the pediatric surgeon who has been following Kylie all along, Dr. Abdessalam. It has been nice to have all of our appointments at one location.
Kylie underwent some procedures a little over a week ago at Children's. Dr. Zapata performed an endoscopy as well as a sigmoidoscopy. In other words, the scope looked at both ends. He looked at the anatomy and took some biopsies. Following this procedure and while she was still under sedation, she underwent an MRI of her spine. You may be wondering what an MRI of her spine has to do with abdominal distension. Sometimes children can have tethered spinal cords. From what I understand, tethered spinal cords can cause nerve damage which can in turn result in abdominal distension issues.
We found out the day following her procedures that the MRI results were all normal. And then just yesterday afternoon I received a call from the GI nurse regarding Kylie's biopsy results:
- Kylie tested positive for lactase deficiency. In other words she is lactose intolerant.
- Dr. Zapata suspects small intestinal bacterial overgrowth (SIBO)
- Floppy pylorus (valve at the end of the stomach). Kylie's pylorus was completely wide open during the entire procedure. That is the valve that opens to let food pass through to the small intestine but then closes.
So, you may be wondering, what is next? First of all, Kylie will be starting a dairy-free diet. Yes, it will be life-changing. And I am not looking forward to this in the least, but it must be done. Kylie was scoped for the first time about two years ago. After doing some research yesterday, I found out that this specific test (called a disaccharides test) was NOT performed by our former GI doctor. My initial reaction was frustration and anger. How could this test not have been done? The nurse explained that this test is NOT a routine test. She said that it is actually quite rare that they perform this test. I'm aware that the first time Kylie was scoped was before she became extremely sick. We were just beginning to explore all of the possibilities of what could be wrong. However, I still struggle with why they would not have done this test. Secondly, many of you know that before Kylie became extremely ill, we had Kylie on a very strict milk and soy free diet. During this time, we saw absolutely NO change in her distension. This is my thought as to why we had no success on the diet: the c-diff bacteria that was brewing in her colon and that would end up making her so incredibly ill was masking all of our efforts in the milk-free diet. So, basically, the terrible bacteria was contributing to her distension, making it impossible to see improvement with the diet. I don't know if this is accurate, but it would make sense to me. If this specific biopsy would have been done, could we have spared Kylie's colon? I don't know. After taking a few deep breaths, I decided that it does not pay to be bitter. All is said and done. We cannot change what happened in the past. I am just so thankful that Kylie is able to lead a completely normal life without her colon.
And now back to Kylie's treatment plan. Dr. Zapata also suspects small intestinal bacterial overgrowth. So, Kylie will be rotating between two different antibiotics for the next 4 months to treat the SIBO.
Lastly, Dr. Zapata observed something extremely strange anatomically when he was performing the endoscopy: a floppy pylorus. I wish I could give you more information. However, all I know is what I mentioned above. I really struggle to understand Dr. Zapata. He has a very very strong accent and it takes everything in me to concentrate and follow what he is telling me. If only I was fluent in Spanish. However, he wants to send Kylie to the children's hospital in Kansas City for some special testing regarding this issue. She has already had colonic motility testing and now the plan is to undergo the upper motility testing. This testing is not offered in Omaha. It sounds like we could go back to Ohio or else to KC. I like the closeness of the KC hospital. I was told by the nurse that I should expect a call within the next week or so to set up Kylie's upper motility testing.
This is a super long post. Thanks for staying with me! I am so grateful to the Lord that we have had some tests come back showing us some things. We have prayed for results for years now. Kaycee and I want to thank you for your concern for Kylie and for your many many prayers. We feel so very loved and cared for by all of you!
Would you pray with us that the dairy-free diet would be successful and that it would solve her distension problems?
We would also appreciate your prayers as we prepare to go for more testing in KC.
Lastly, I will continue to update this blog now. I'll let you know how the diet is going. I will also keep you posted as to our plans to go to KC.
~Jill
Lastly, I am so incredibly thankful to each and every one of YOU who have been our prayer warriors and encouragement along this journey. THANK YOU from the bottom of our hearts once again!
