Pleased

I took Kylie to two follow-up appointments yesterday (GI and surgery). I'd have to say that since she was hospitalized for 24 hours on December 26, we have seen some nice progress. Doctors seem to be quite pleased. We still do not know exactly what happened in December. However, in December and prior to December, she was on a couple of different medications for small intestinal bacterial overgrowth. Docs think it's possible that one of the meds may have caused the episode back in December.

It seems to be taking lots of time (as in months) on the milk-free diet for Kylie's distension to go down. She truly seems to be doing better and better. I didn't expect results to take months but as dilated as her small intestine was, it is very possible that this explains this long process.

Kylie's tummy is always very flat in the morning and is most distended and filled with gas by evening. Her appetite also follows this in that her best meal is breakfast and her worst meal is supper.

The GI doctor really thinks we still need to go down to KC for upper motility testing. The surgery doctor does not think this is necessary. Kaycee and I are thinking along the same lines as the surgery doc. We really do not want to put Kylie through this because we don't think that we would gain much through this testing. I requested for the surgery doc to talk to GI to determine if this is truly necessary. So, I hope to hear something soon.

Kylie's diet is going really well. She is such a trooper and seriously never complains about not being able to have certain things. Last night for supper I wanted to try a new recipe from my sister: a cheesy soup. Obviously it was one that Kylie wasn't able to have, so I made her some chicken noodle soup (sadly, from a can) and added some bacon to make it a little more like the rest of ours. As we're eating, she says "Mom, this is great. Can we have this again tomorrow night?" I almost think that it is to her advantage that we've had to start this diet so young...she just doesn't really even know or care about the yummy foods she's missing out on. She does occasionally say she misses drinking milk or eating cheese, but hardly ever. Now, I really do try to feed the entire family the same dairy-free dish the majority of the time. I really make the effort to not make her feel different from everyone else.

Overall, Kaycee and I are really encouraged with how things are moving along. We will just keep pressing forward with Kylie's diet in hopes that her distension will continue to improve over time.

Sorry for the Delay

Sorry for the delay in this update. It has been nutty around here. I will relieve all of you and let you know that we are home. We arrived home around 7 pm last night. Yesterday, I was nearly ready to publish a blog update I don't know how many times and then doctors would come in and completely change the plan of action. Yesterday, we saw numerous doctors from surgery and GI, each saying something different as to what they thought was going on inside Kylie. Everything got very complicated with all of these different opinions. What it comes down to is this: no one really knows what is going on inside of Kylie. Doctors are puzzled. I won't even begin to bore you with all of their speculations. Yesterday morning began with doctors orders to not let Kylie eat anything, start an IV, as well as begin some IV antibiotics. By mid-afternoon, orders changed significantly: Kylie could eat anything on her lactose-free diet, they stopped the IV antibiotics, stopped the IV, and they mentioned the possibility of dismissal.

What it comes down to is this: I am just SO incredibly thankful that nothing incredibly serious became of this scary incident, that another operation was not necessary, and that we are home after a very short stay. Kylie remains one of all these doctors' biggest mysteries.

I will go ahead and keep these pictures in this post that I was planning on posting yesterday.

We had a salon in our hospital room this morning. Kylie requested that I paint her nails.
Letting the nails dry while watching "Beauty and the Beast".

We got a really great room this hospital stay. It looks out over Dodge street.

Lounging in the rocker.

Rush to ER

I don't think anything is more discouraging than sitting in a hospital room. And sadly enough, that is where Kylie and I are right now. We had a huge scare about noon today and I found myself rushing Kylie to Children's ER.

Kylie woke up feeling just fine (as far as I know). She was busy all morning playing with all of the new toys she got for Christmas. Next thing I know, she is coming to me telling me she needs to go to the bathroom (tummy ache). I looked at her and I just could tell something was very wrong. She was white as a sheet, her eyelids were very blue, and she was all clamy. She looked awful! All she wanted to do was lie down. At first I thought, "oh no, I think she's coming down with the stomach flu". But as I was helping her in the bathroom, I noticed her abdomen (intestine) was bulging in a couple of different places. I started panicking and yelled for Kaycee's help. We knew something just wasn't right, so I put a call into the surgeon on call and he told us to come on in to the ER.

By the time we arrived at the ER, Kylie was looking much much better and was already feeling better. We thankfully got right back to a room and she was promptly taken to radiology for an e-ray of her abdomen. All the x-ray showed was what we usually see: a very dilated small intestine but nothing else concerning. When the pediatric fellow came in to see Kylie, he observed what her intestine was doing at home: bulging. You could see the bowel loops moving. It was so bizarre. It was like watching the egg move through the snake. I've never seen Kylie's body do anything like this before. The fellow didn't know exactly why her body was doing this but wanted to admit her for observation. So, here we are. Since we've arrived, they've been doing some rectal irrigations. She's been such a trooper through these. She's been eating well too...she can eat anything as long as it is lactose-free.

I should also mention that Kaycee and I have been discouraged about Kylie's progress on the lactose-free diet lately. We saw such nice improvements in the first couple of weeks. But since then her tummy has been much more distended. And I must say that we have not cheated at all since beginning the diet. There is still something that is causing this over-production of gas which is dialating her small intestine.

We'll see what Dr. Abdessalam has to say during rounds tomorrow morning. However, it sounds like she will be able to be discharged sometime tomorrow.

Thank you once again for keeping us in your prayers!

~Jill

Psalm 118:28-29

You are my God, and I will give you thanks; you are my God, and I will exalt you. Give thanks to the Lord, for he is good; his love endures forever.

My heart rejoices today for what the Lord has done in our lives. As I look back to this day exactly two years ago, I stand amazed and overwhelmed at the Lord's goodness. Two years ago Kylie was fighting a terrible infection and nearly lost her life. We were on our knees crying out to the Lord to save our little girl. Our prayers were heard and the Lord brought Kylie through the critical state she was in. What a day this is to remember His goodness to us, to worship Him and to thank Him for the incredible blessings he has bestowed upon us!

These pictures were taken exactly two years ago this Thanksgiving/Thanksgiving weekend:

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!

The New Diet

Our hearts are OVERFLOWING with joy and thankfulness today! Today is our fourth official day on the lactose-free diet and we are seeing significant improvements in Kylie's abdominal distension!!!! The first couple of days that we were on it I kept thinking and wondering how long it would take before we would see any sort of improvement. I was trying really hard not to get my hopes up too much since we tried this diet two years ago with absolutely NO success. When we were on it a couple of years ago, I know that we tried it for at least a month and saw not even the slightest bit of improvement. Soon after that, Kylie got so incredibly ill. It had to have been that awful c-diff bacteria that kept us from seeing any improvement with her change in diet. And back then, we cut out both soy and lactose. Currently, we have just cut out the lactose. Anyway, we are SO excited about this progress and want to thank all of you for praying for us! Boy, has this ever been a journey! But I can't even imagine what it would be like without all the support that you have given us through the past few years.

I just took these pictures of Kylie this morning. I asked her if it would be okay to put a picture of her "new" tummy on the blog. I know, I should have taken a before picture of her tummy so that you could see the major progress. Well, you'll just have to trust me. A month ago, I was looking for "maternity" clothes for my 5 year old daughter. Her tummy was so incredibly large that it was peeking out of any normal shirt. Thankfully, the current styles for little girls are long shirts and leggings. It met our needs perfectly.

In the past four days, my kitchen has seen me a whole lot. I feel like I am living in my kitchen. Yesterday, I baked bread for her without milk. For dinner last night I attempted a stir-fry recipe. As I was making it, it was just not looking the most appetizing. In fact, it was looking really gross. As I was preparing it, I was thinking, "this is looking like a Dairy Queen night". Oh wait, nevermind, that trick won't work anymore!

I have about a week's worth of lactose-free meals planned before I need to begin hunting for some more recipes. I welcome any suggestions for lactose free cookbooks or tasty recipes. I so appreciate all of you who have been so encouraging to me in this diet change. It isn't easy, but it has been going so much better than I expected!

It's Been Nearly a Year Since I've Updated

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

Kylie's Central Line Out and Austin Here!

Oh boy! And I really do mean that--our precious little bundle, Austin Joel, is here. Two weeks ago today was a day of craziness and complete blessings all in one. That Tuesday morning, I received the call from Dr. Abdessalam's office that we could discontinue Kylie's TPN. That call was so incredibly relieving, but even more relieving as my day progressed. As I mentioned in my last post, I had been feeling so awful--unable to sleep, nauseated, and incredibly itchy from head to toe for a couple of weeks. That same Tuesday morning, I received a call from my OB doctor with some lab results that had come back from the day before. There was a reason I was feeling so bad--they diagnosed me with a rare pregnancy-related liver condition called obstetric cholestasis. My doctor told me that I was at a high risk for a still-born birth and that they would be monitoring me very closely. I was completely overwhelmed with this unexpected news and just started praying that the Lord would give me peace and protect our little baby. It wasn't but a few hours later that I started feeling contractions. I seriously thought, this isn't really happening--not six weeks early! Well, it was. We were up at the hospital at 7:30 in the evening and Austin (6lb. 6oz) was born at 10:24pm. Everything went so smoothly and we are so incredibly blessed to have a healthy baby boy. We stand amazed how the Lord worked everything out that day.

Well, here we are two weeks later...Kylie has her central line out and is eating really well! I am feeling SO much better. Praise the Lord that the cholestasis was just pregnancy related. Perhaps that was the reason that I went into pre-term labor. I don't know if we will ever know for sure. Austin is doing just fabulous. He is still in the NICU and we hope that he will come home in another week or so. We are just waiting for him to take all of his feedings by bottle. He sometimes is still too sleepy to wake up and eat. Carson and Kylie still haven't gotten to meet him due to the current flu season regulations. We are so excited to bring him home!