Monday's Appointment

Kaycee and I are encouraged after Kylie's appointment yesterday afternoon. The x-ray looked slightly improved from the one she had last Friday. Secondly, we've had some good success in movement of the bowels. These two things have provided us with much relief and hope once again. She has another x-ray and doctor's appointment a week from tomorrow.

The Weekend at Home

We got home about 12:30pm on Saturday. As soon as we were in the door, Kylie was off to play. We hardly heard from her for the next hour. She had had so much one-on-one time in this past week that I knew she was ready to just be alone. We all had a long afternoon nap and it was absolutely marvelous to have our own beds back. There were so many sleepless nights on the hospital couch between Kaycee and I. This morning, we went to pick up Carson from Kaycee's parents. It is so good to be all together once again.

We want to ask for your continued prayer for Kylie. She is feeling great and seems to be completely recovered from her surgery. However, Kaycee and I are quite discouraged and concerned about how her system is working. She has not had any bowel movements for about three days now. I will be checking in with Dr. Abdessalam tomorrow to give him an update since we've been home. I just don't know where we are to go from here. She has had every test possible in the past year and a half--she's been scoped, had an upper GI and small bowel series, had biopsies, been tested for inflammatory diseases, had allergy testing, motility testing. Every test comes back COMPLETELY normal yet something is so very wrong. It is very frustrating and such a mystery as to why her colon will not work.

Ways that you can pray for us:

• Please pray that Dr. Abdessalam would be given much wisdom as to how to help Kylie.
• Please pray that Kaycee and I would be given patience in waiting.
• Please pray that the Lord would miraculously heal Kylie's body~that her colon would start functioning normally.

Pictures

Saturday

We are in somewhat of a tough situation right now. This is the deal--Kylie was given permission to begin eating anything of her choice yesterday at lunch. She's been doing great with eating and drinking. They also disconnected her IV fluids yesterday. She is feeling super good--playing, running around. We couldn't be happier with her physical and emotional state. However, her colon just doesn't appear to be functioning properly. We don't know if this is something that will work itself out over time or if ultimately she will have to have her entire colon removed. Since they are not doing a lot for her here at the hospital right now, her doctors have said that she is free to go home. Rather than stay here and wait around to see what her colon is going to do, we've decided to go home and wait it out. We will be keeping a close watch on her tummy distension, body temperature, bowl movements, etc. We'll also be in contact with Dr. Abdessalam this next week. We are very hesitant about about this entire situation but know that everything is in the Lord's hands and we trust Him.

Doctors Concerned, Baffled

Kylie has been feeling really good physically the past couple of days. She has been up and around a lot. The tough part about yesterday was just seeing how sad she was. She is so ready to go home and just looked depressed and expressionless yesterday. I tried to think of everything possible to cheer her up. We went for lots of walks, took a trip to the rooftop patio, painted her nails, listened to music. I finally called Kaycee and told him to bring Carson up. I thought that might be really therapeutic for her. And it did help. It was just really great to be together as an entire family for an evening.

This is Kylie's current medical situation: She has been going down for an x-ray every morning. The partial obstruction that was an issue a couple of days ago is all cleared up. But unfortunately, there is a new development. The x-ray is showing that Kylie's large intestine is very distended (as was the case a year ago). When she had her reconnection surgery a week ago, the intestine was absolutely, completely normal in size. It is such a mystery as to what would be causing this distension now. The doctor and radiologist have also observed that a good portion of the colon is smooth and does not have features. This is not good. They should be seeing what they called, "features". So, what does all this mean? She may possibly have an infection in her large intestine. They started treating her for an infection today. The really nice thing is that they are opting not to test her for infection because if they did and the test came back positive, she would be confined to her room. So, they are just going ahead and treating her without officially testing her. Dr. Abdessalam is absolutely baffled as to why all of this is happening based on the completely normal results of the motility testing. She has had just a slight fever in the past 24 hours which got me really concerned last night even before I knew about the situation with her colon. She had been completely fever-free before yesterday. The doc has put her back on a regular diet now that her obstruction is not an issue. It will be interesting to see how her colon handles the food.

Things I am thankful for today...for Kaycee who has spent the past two nights with her so that I could get sleep at home, for how well Carson is doing at Opa and Oma's and the chance we could all be together last night, for Kylie's renewed spirit today, for the wonderful doctors we have caring for our little girl, for all of the incredible support and prayers from family and friends, for a God who will never leave us or forsake us and who continues to uphold us in the midst of discouraging times.

A Super Great Day Today

Kylie did end up having her first poop late morning yesterday and continued to have them throughout the day. It was so relieving to see her colon beginning to work. However, she also continued to throw up all day and feel awful. I was getting really concerned about 5pm and so the nurse put a call into the doctor. The resident stopped by and agreed that things just didn't sound right. So, they ordered an x-ray. The x-ray ended up showing a partial obstruction where they connected the two intestines. The doctor said that this isn't anything to be concerned about and that the intestine will widen as the swelling goes down. Today has been a super great day. The bowels have continued to move today and Kylie is just starting to recognize the sensation. You'd never think that a such a basic bodily function could get you so excited.

She's been up and walking lots today, strolling a baby from the playroom around the floor. She's been enjoying the fun gifts that have been brought up to her too. We have been very encouraged today. Thanks so much for keeping us in your thoughts and prayers. Our spirits have been lifted today.

Pictures from a few days ago:

Setback Today

We are all a little discouraged today. It all started with Kylie starting to throw up at about 7 am this morning. Her tummy is also a bit distended. That is a word we hate to hear after her whole ordeal last Nov-Dec. So far, doctors think that this is nothing more than her just needing to poop. The difference between Kylie yesterday and today is night and day. She was doing so so so good yesterday--ate very decently, made great conversation, and slept wonderfully through the night. Today, she isn't talking and just acts like she feels awful. She doesn't want to leave her bed. It has been an incredibly long day so far. Here's our prayer request: please pray that Kylie would poop and that this would be the extent of the problem.

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.