Good Progress

Kylie has had a really good day today. Kaycee stayed with her for most of the day while I went home to get some sleep, pack a few more items, and do a couple of errands.

Dr. Abdessalam took her off her morphine since she was at such a low dose anyway. She seems to be doing awesome on the tylenol with codine and another drug. Now that she is off the morphine, we have freedom! We can leave the floor to go down to the lobby, cafeteria, outside on 2nd floor. It is so nice. Kylie also has permission to drink anything she wants and was encouraged to start eating a little bit (which she has no desire to do yet). She has been talking much more today which is also encouraging. The next big thing the doctors are waiting for is for her to start pooping. This is our big prayer request too. She has no memory of what it feels like since it has been just about a year since her ileostomy. Please pray that we will get results quickly and that it won't be too painful with the 3 incisions on her abdomen. I think that this will be her ticket home.

Opa, Oma, and Carson came up to visit tonight. It was fun to see all of them. We sure miss our little man, but he is doing great. He gets to see his cousins and play with them daily since they live right up the hill from Opa and Oma. I honestly don't think he misses Kaycee and I much :) He's having too much fun.

Thanks for keeping all of us in your prayers.

Emergency Surgery Last Night

It seems that the excitement never ends around here. The surgery that was scheduled for Monday became an emergency surgery last night. We knew that Kylie was at a high risk of prolapsing again. However, Kaycee and I worked hard this week to keep her somewhat calm--no activities that would push the intestine out. Every time she started to cry real hard or have a fit, we had to remind her to settle down so that she wouldn't push her stoma out.

Last night after we had eaten supper, Kylie told me she was going to go potty. She has just started to like closing the bathroom door. Well, last night, I heard her lock the door which she has never done before. Next thing we know, she is locked in the bathroom and absolutely hysterical. I ran outside to try to talk to her through the window and walk her through unlocking the door. She could not calm down enough to listen to me at all. Next thing we know, we are sending Carson through the tiny window to go and unlock the door for Kylie. Thankfully, he knew exactly what to do! But the force of her crying made her prolapse. She started turning pale almost right away and wanted to lay down.

We quickly packed a few things and took off for Children's. We arrived at about 7:15. Dr. Cusick was the ped. surgeon on call. He tried to push the approximate 4 inches of intestine back in as they had been successful in doing last Friday. However, she was really fighting it this time and very uncomfortable. Dr. Cusick decided that it would be best just to take her to surgery and reconnect her instead of waiting until Monday. He put a call into Dr. Abdessalam, the surgeon who was off last night but has done almost all of her previous operations just to let him know what was happening. Out of the kindness of his heart, he offered to come in and help Dr. Cusick. We were overwhelmed with his generosity. So, together, the two of them reconnected Kylie's small intestine to her large intestine, removed her appendix, and did a scar revision on her old stoma site. Again, we stand amazed at how the Lord worked out every detail! The surgery went wonderfully. She went back about 9:15pm and the surgeons came out at 11pm saying that they were done.

Kylie had a good night and has been very comfortable this morning so far. She is on a morphine drip to keep her comfy. They already want us to get her up today and help her walk around the room. We just requested a wagon so that we can begin with helping her sit up and get her out for a little ride here soon.

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.