"The Tummy Bag"

After Kylie’s ileostomy surgery, I knew I had to come up with a way to explain to a three year old what the new and unfamiliar bag was that was stuck to her abdomen. I wanted to do the best I could to make the experience as positive as possible. My goal was to come up with a simple, friendly way to talk about her ileostomy. So, I decided that we would call the new addition “the tummy bag”. Kylie has adjusted very well to the bag and we talk about how it is helping her to get better. However, she is still very scared of her stoma. She just screams and shakes when she sees it. The bag covers it nicely so that she can hardly see it most of the time. However, when the bag is off, I have to make efforts to cover it up and distract her. We change out the entire bag about every 2-3 days. Let me tell you, I dread those days. I almost have to have Kaycee here to help me because she fights it just terribly. The worst part of it is peeling the old one off. It is so incredibly sticky. Hopefully within time, she will think nothing of it.

Last night, we had another scare…I was worried that she had another partial obstruction. However, things turned out to be okay. Her appetite and ostomy output both picked up. I seriously never thought I’d be so happy to see poop. Thank you dear Lord for watching over Kylie!

A Good Morning

Kylie is doing great this morning. She is having good output from her ileostomy. What wonderful reassurance that is to me that everything is working properly. Emotionally, we continue to see such good things happening. Kylie's personality and obedience is all coming back. When I think back to how things were only 2-3 weeks ago, I am utterly amazed at what an awesome God we have who hears our prayers. Three weeks ago, I was almost ready to lose my mind. I was honestly beginning to wonder if Kylie's issues were going to be permanent. It was very scary. I seriously felt like I had two special-needs children. As most of you know, Carson was born with microcephaly and to describe it simply, his brain is not growing (although he is doing extremely well for his diagnosis). We love him to pieces and he is so much fun. However, put the two of them together and it was chaotic. With the Kylie’s behavioral issues, she was more than a handful. I could not take my eyes off of her for more than one minute or she was destroying something. I could actually trust Carson way more than I could Kylie. It is usually the opposite. Here’s a glimpse of how crazy life was here one afternoon…Kylie found gum in Kaycee’s desk and started stuffing it into her mouth. Next minute, she’s yanking the return address labels out of the dispenser. Then she’s in the kitchen completely cleaning out one of the cabinets and throwing everything on the floor, then she’s unwrapping gifts under the tree, then she’s into my cleaning supplies, then she’s taking ornaments off the tree, and then I finally see her sitting quietly in the family room by her toys. Oh, what a relief, she’s finally playing so nicely—so I think. Little did I know, she was unraveling the end of her ileostomy bag and draining the contents onto our nice, only three year old carpet. I was nearly ready to lose it. It all really happened this fast, one thing right after another. I’d be cleaning up one mess and she’d be working on another.

Life is much different in our household today! Kylie can be trusted again and I have my little helper back. We have SO much to be thankful for! Thank you again for praying for our family. I know that there are so many of you praying, many of you whom I do not know or have not met. Thank you from the bottom of our hearts.

Thankful To Be Home

We just made it home a little bit ago. I sure wish I could have updated all of you sooner, but I didn't have time to grab my computer. We sat in the ER last night until about 3:00 am. The x-ray of her abdomen looked "terrible" last night, as were the words of her doctor. The pediatric surgeon said that she looked great for as bad as the x-ray looked. They started her up on IV fluids there in the ER and then admitted her. There was talk of putting an ng tube in. However, thankfully they opted not to. Thank you Lord! Kylie and I slept for about three hours until morning rounds began. This morning, her x-ray was unbelievably better. They put her back on a regular diet and told us that as long as she was doing well, they would let us go home today. Dr. Abdessalam was very honest with us and told us that he couldn't explain what happened or give us a reason as to why this happened. Apparently, there must have been some sort of an obstruction that resolved itself. We are so thankful for our very brief stay. However, I am definitely struggling with fears of this happening again. We will continue to rest in the hands of our Almighty God.

On Our Way to ER

Please pray for Kylie right now. We believe she may have an obstruction. She's had very little out of her ileostomy today and she's complained of a tummy ache. I started suspecting something this evening. She woke up just a bit ago throwing up. My sister, Kelsey is on her way to stay with Carson. We're headed to Children's ER right now.

We're Home Once Again!

We are SO thankful to be home!! I wish I could have posted sooner, but it's been a little crazy. On Tuesday night, I had a really bad headache and so Kaycee told me to take Carson home and get a good night's rest while he stayed with Kylie. Unfortunately, that headache turned into the stomach flu. I felt so awful on Wednesday that I couldn't even take care of Carson, so Kaycee's parents graciously took Carson for the day. Kylie was dismissed about noon on Wednesday. My mom drove Kaycee and Kylie home since I had driven the van home the night before. I don't know what we would do without our families! I am feeling much better today and Kylie's doing GREAT! We are SO pleased with her progress. Emotionally and behaviorally, we have seen such improvements. She is such a different little girl now than she was right before her second surgery. We can only give credit to our Heavenly Father! There is no doubt, we will still have some re-training, but not nearly to the extent that I thought we might. I hope to post some more pictures soon and will continue to keep all of you updated, especially as we approach the motility testing in Ohio towards the end of the summer.

Improvements

Other than being a little cranky and bored today, Kylie seems to be doing quite well. Her early morning abdominal x-ray showed even more improvement than yesterday. She is on a regular diet as of today and is eating quite well. I think that if she handles the regular diet and there aren't any more set-backs, they might send us home tomorrow. That would be so wonderful! We'll keep you all posted.

A Restful Night

Kylie slept really great last night. She was in such desperate need of a restful night. When she woke up this morning, she wanted to sit up and color, do puzzles, and look at books. It was such a great way to start our day and I am encouraged with her progress. The surgery team has already been in this morning. They said that the x-ray she had early this morning already looked much better than yesterday's and they pulled her ng tube--yeah!! The doctors don't want her to have anything to eat or drink until possibly tonight. She's breaking my heart right now because she's begging for peanut butter on toast and macaroni and cheese. We're looking forward to Kaycee and Carson's visit this evening!