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!

Saturday

Kaycee stayed with Kylie last night so that I could get a good night's rest. This morning when I arrived, we got Kylie out of bed for the first time and took her for a ride in the pink car. She did very well but was ready to lay back down after four times around on the floor. She just couldn't seem to get comfortable after we got her tucked back in bed, so they upped her morpine just a bit which has really seemed to calm her down. As she lays here, she is so expressionless and untalkative. The only time she really talks is if I ask her a specific question. Of course these behaviors remind me of the difficult days we endured in December and January. These are such long days in the room. I just popped in "Beauty and the Beast", so hopefully that will entertain her for a little while. I hope to get her up again in a while and take her on another car ride. They aren't allowing her to eat anything as of yet. She can have ice chips and water, but hasn't even been interested in those. I anticipate a few more days here yet.

We haven't heard anything on the dates for going to Ohio yet. I have been in contact with the nurse coordinator there and we should hopefully know something in the next couple of weeks or so. All of Kylie's records were supposed to have been sent to OH in January. However, I found out in March that they still had not received them. So, they arrived just a month ago or so. We are getting very anxious to get this motility testing done so that we can get rid of this ileostomy. The ileostomy was absolutely necessary and it has done wonderful things for her. However, it has also caused more than enough trouble. We'll let you know when we hear on the dates.

Kylie's highly entertained with a new toy given to her

Time for an x-ray baby

Taking baby's temperature

Back in the Hospital

It has been so long since I've updated. For days now, I've been intending to tell all of you how great Kylie's been doing. Well, that all changed last night. Around 7 pm or so, Kylie's intestine prolapsed. I rushed her into Children's ER while Kaycee stayed at home with Carson. By the time we arrived, her intestine had probably come out about 6 inches. Both operating rooms were busy when we arrived, so we did have to wait a couple of hours. Around, 10:30 or 11pm, Kylie was back in surgery. My mom sat with me during Kylie's two-hour surgery. This surgery was the most involved of any of her surgeries so far. The surgeon actually closed up her old stoma on her left side and moved it to her right side. A new location would help ensure that this would not happen again. Her past surgeries have been done lariscopically. However, he needed to completely open her up last night, so she has about a 3-inch mid-line incision--ouch! The surgeon did have to remove the 6 inch segment of small intestine that prolapsed due to the blood supply that was cut off. He is very confident that in no way should this affect the function of her small intestine. Thank you Lord!

She had a really good night as she is on a morphine drip for pain control. As of right now, she is still doing fairly well. I can tell she is a little more uncomfortable. She can hardly move due to the incision. Poor thing! She doesn't even want me to hold her.

Again, we would so appreciate your prayers for Kylie's comfort and for a speedy recovery. It is hard to fathom that we are back here after months of doing so well. But regardless of our circumstances, we know that the Lord is in control and that Kylie is in His hands. Again, our trust is in Him.