Change in Plans~Surgery on Monday!

Many of you know that we were supposed to leave for Disney World on Monday. Well, we have had some things happen in the past week that have changed our plans. We are disappointed about postponing our trip, but feel very at peace that this is what we are to do. Last Friday night, my mom was watching Carson and Kylie while Kaycee and I went out to celebrate our 8th anniversary. After we had finished eating, I got a call from my mom saying that Kylie's intestine had started to prolapse. We seriously could not believe it. We rushed over to her house to check things out, and sure enough, it had. So, on to Children's ER. Thankfully, the surgeon was able to push the approximate two inches of intestine back in right there in the ER. There was no guarantee that this wouldn't happen again. After consulting doctors and after much discussion, we decided that it would be too risky to travel down to FL for a week. We knew in our hearts that we just needed to get her reconnection surgery done. We are planning to reschedule our trip to FL in the spring due to my risk of pre-term labor. So, Kylie is going into surgery on Monday, September 21 at 1:00pm. They will be reconnecting her intestines, removing her appendix, and doing a scar revision on her old stoma scar. This surgery is the most risky surgery she will have had since there cannot be any leakage where the intestines are reconnected. If leakage occurs, Dr. Abdessalam will have no choice but to do another temporary ileostomy. We were told to expect her stay to be about one week. We would really really appreciate your prayers for Kylie. She still has no idea about what's ahead. I think we'll start preparing her this weekend. We'll keep all of you posted.

Back Home

We are so thankful to be back home and are continuing to reflect on the Lord's goodness in our lives. Our entire trip could not have gone any smoother--all the way from catching our flights to Kylie's testing and hospital stay. We continue to stand amazed at the completely normal test results and are so thankful and grateful. If all of her intestinal problems have been due to immaturity of the colon which she has supposedly grown out of and if her entire large intestine can remain...all I can say is what a miracle of God this is!

We were very impressed with our stay and Kylie's care at Nationwide Children's Hospital. We were treated wonderfully. Kaycee and I were so amazed at the size of the hospital. It was probably three times the size of Omaha Children's and they are continuing to expand. A 12-story addition is currently in progress. It's amazing.

One of Kylie's favorite things about her stay was the hospital's rooftop playground. We felt it was very therapeutic for her and it was super neat. I've posted just a few more pictures from our time there.

Just yesterday, I put a call in to pediatric surgery (here in Omaha) to get her reconnection surgery scheduled. It is scheduled for Wednesday, October 14 at 10am. We will have a clinic visit next week with Dr. Abdessalam. It will be really interesting to hear what he thinks of these test results.

Test Results

Kylie had the second part of her test this morning beginning at about 8:30am. She was given some Versed to help calm her. For this test, they placed a small tube in her bottom. Attached to the end of the tube was a tiny balloon. The balloon was filled with small amounts of air to measure how her muscles and nerves were working. It was extremely important that she be absolutely still for this test and she was 100% cooperative. We were so incredibly thankful. Obviously, since we've come this far, we want as accurate test results as possible. Today was much more uncomfortable for her than yesterday but I would say they had all the information they needed by 9:00-9:15. Other than being a little loopy from the medicine, she was doing great and they sent her back up to her room.

Dr. Punati, her motility doctor, came up to her hospital room about two hours following the test to review all of the study results with us. She first of all said that Kylie was 100% cooperative for both tests and they got very accurate information. Secondly, she said that they had very good news. For the motility test, they were able to test 80% of her colon, which is great. Secondly, she said that all the results showed completely normal strength and sensation throughout her entire colon--absolutely nothing concerning or abnormal. For this morning's test, the anorectoal manometry, again--an absolutely normal sphincter muscle. The test revealed nothing abnormal. These were not the test results that we were expecting, obviously! I was getting a little distressed. So, if there is no motility problem, what is the problem?? Why has she dealt with severe constipation ever since birth and struggled with severe stomach distension since she was a baby? All which led us to her terrible c-diff infection and the chaos of the past year. Dr. Punati believes that Kylie had a very immature colon. She said that she thinks Kylie dealt with what she called some "allergies". By "allergies" she was not referring to a milk allergy or a wheat allergy, but rather as she explained it, "an immature colon". She says that children outgrow this immaturity and she believes that Kylie is ready to be reconnected. Dr. Punati thinks that Kylie will have no problems. This is such good news and definitely not the news we were expecting. I think it makes us a little nervous. We just don't want to end up back where we started. It is hard to imagine that she could have out-grown this immaturity within a year. It would be so incredibly wonderful if this was the problem. So, that's what we found out today.

In less than a month, we are heading to Disney World thanks to the Make-A Wish Foundation!! We are so excited. So, we will plan to have her reconnection surgery after we get back from Florida. I think that we have decided it would work best towards the middle of October.

Well, we are all back here relaxing at the Ronald McDonald House. Our plane leaves at 3:00 tomorrow afternoon. Wish it was sooner, but we'll just hang out until then.

Kaycee holding Kylie during her motility test

A picture of the machine used to do her motility testing

Kylie with her new teddy bear after her test this morning

Motility Test

Today has been a good day and Kylie did great. I would have had this posted sooner, but somehow I lost my complete update earlier. I will give you an idea of how our day progressed today. At about 9am this morning, radiology came to get Kylie from her hospital room and took her down for the placement of the motility catheter. The motility catheter is a flexible plastic tube that was placed in her colon. She was sedated for this procedure which took about 30 minutes or so. Following the placement of the catheter, we were walked down to the motility clinic. We were placed in a special motility testing room which we spent most of the day in. The nurse hooked Kylie's catheter up to a special machine with a computer. The catheter had holes at regular spaces that measured the pressure in different areas of her colon with water. They wanted Kylie's sedation to wear off so that she would be awake for the remainder of the study. So, after about two hours, she began to wake up. And by three hours into the study, they wanted to observe the contractions of her colon by having her eat lunch. I found it so interesting that even though her large intestine is not hooked up, a full stomach still produces contractions. About an hour after lunch, they gave her some medicine through her catheter so that they could watch the contractions with the medicine.

The great part about the test today is that Kylie was not confined to her bed for the test. We were able to hold her and she was able to sit up and play. We did have to keep her as still as possible, but it was such a blessing that she didn't have to lay down for the entire test. The test itself was not at all painful. However, she experienced a small amount of cramping following the medicine that was given through the catheter.

At about 3:00 this afternoon, the motility doctor came into the room and said that they had enough information to complete this part of the study. Originally, we were told the test would last until 5:00. So, we were thrilled to be done 2 hours earlier than expected.

They will complete the study tomorrow morning with a test called anorectal manometry. She will most likely be sedated for this test which can last up to 2 hours or so. Following this test, the doctor will sit down with us and present the results and all of the findings of the motility study.

Thank you so much for upholding Kylie in prayer today!

We've Arrived!

Hello everyone! We've made it here to Columbus, OH. We left Omaha yesterday (Sunday) at 5:45am. From Omaha, we flew to Houston and from Houston to Columbus. Kylie was so excited for her first airplane ride. She was a great little traveler. We were so thankful that we had no issues getting through security with Kylie's medical supplies. And all of our flights were on time. It couldn't have been a smoother day. When we arrived in Columbus around 3pm, we took a taxi to the Ronald McDonald House where we are staying. It is located right across the street from the hospital. We feel so blessed to have a room here. It is a newly built, beautiful facility. Obviously, we will spend most of our time here at the hospital with Kylie. One of us will stay with her for the night while the other goes back to the hospitality house.

It has been a smooth and relaxing morning so far. We had to be to the hospital at 10am for admission. We are on a special gastro-intestinal floor. The GI nurse practitioner came in shortly after we arrived in our room talked to us about Kylie's history. Due to her ileostomy, there isn't much preparation before her motility test tomorrow. Her ileostomy makes it so that she does not need an ng tube or any sort of a clean-out. What a huge relief it was to know this. She is on a clear liquid diet today and this evening, they will start her IV fluids--quite simple.

Thank you so much for praying for us. We have truly felt the Lord's hand through this trip. It is amazing. We'll continue to keep you posted.

Dates for Going to Ohio!

We have just recently been contacted with our dates for Kylie's motility testing in Columbus, OH....August 23-27. We have been waiting for months to hear and so it finally good to be able to do some planning. We will fly out of Omaha on Sunday, August 23. On Monday the 24th, Kylie will be admitted to the hospital in the morning. Doctors will review her history and will get her all prepped for the motility testing which will take place on Tuesday the 25th. According to the packet of information I received, the motility testing can take up to 8 hours (she will be sedated). On Wednesday morning, the 26th, another shorter test will be performed called anorectal manometry. Following this test, Kylie will spend the rest of the day resting and recovering. Depending on how she is doing they may or may not keep her until Thursday. We will then fly back to Omaha late in the day on Thursday the 27th.

We plan to take our computer so we can keep everyone posted on how the week progresses. We are glad to be moving forward with getting Kylie more help and hopefully by the end of the year following one more surgery here in Omaha, she will be able to get rid of her ileostomy.

Dismissed Late Last Night

Kylie had an incredible day yesterday. We were given permission to get her off the floor and I am amazed how that encouraged and inspired her. First of all, we took her down to the cafeteria to get some breakfast in her pink car. It was such a beautiful morning that we ate out on the patio. Then we rode around the lobby area and had her try to walk for the first time. She was quite hesitant but walked hunched over for a short distance. She was so cute--she knew that she was walking funny and so she said, "I walk like a duck". Kaycee and I got a good laugh out of that one. It was so incredibly refreshing to get her out of her room and to see her spirit lifted.

Late morning, they completely took her off of her morphine and put her on Tylenol with codine. They also put her on a regular diet, so she ate just a bit for lunch. She had a great three-hour nap in the afternoon which she desperately needed.

That evening, Kaycee's parents and Carson came to visit. We took her out again and wow, was she ready to get movin'. She wanted to walk everywhere all by herself--a huge change from that morning. Kaycee was the one who said, "I think she's ready to go home". With her great improvements, I was sure they would be fine with sending her home on Monday, but I wasn't even thinking about anytime before then. Well, we asked and they okayed it. The change in her personality, appetite, and physical strength was unbelievable from Saturday to Sunday. The Lord is so good. What evidence he hears our prayers! We were home by a little after 10pm last night. I was so glad that Kaycee could help us move back home.

We all slept great last night. It was so so good to be back in our own beds. So far, Kylie has had a wonderful morning. She's been up and around and playing. She's so happy to be home! She just asked to go up to bed and have a nap, so I just tucked her in. I hope that she will nap good today as she is so sleep deprived. Carson is still with Kaycee's parents, so I will just be playing catch-up today around the house and we'll probably go and get him tonight.

Thank you to all of you again for supporting us in another one of our crisis! Oh how the Lord has blessed us with such wonderful friends and family!