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!

An Exhausting Day

Wow, what a long, tough day for Kylie! She has been through so much today and is absolutely exhausted. I am praying that she will drift off to sleep in the next moments here. The "obstruction" has not resolved on its own. From what I understand, the "obstruction" is not food blockage or a twist in the intestine. Rather, since her reconstruction surgery, the small intestine has been slow to start working again. There is a lot of air that is trapped, causing some distension. So, they inserted a hose-like instrument into her stoma and attempted to release some of that air. I think that it was successful. They also inserted an ng tube (tube through her nose that goes to her stomach) which also is supposed to help with this air issue. She absolutely hates this tube and it makes her gag so bad. Poor girl. I honestly don't completely understand this "obstruction", but we are praying that the problem would be resolved quickly. After all of this, her IV went bad and was that an ordeal or what! She fights everything just terribly now--even just having her blood pressure or temperature taken. Following all of this, they took her for one more x-ray. I am so tired of holding my little girl down for everything that they have to do. It is emotionally exhausting. Oh how Kaycee and I just wish we could take her place. I am SO looking forward to a fresh new morning. Thank you so so much for upholding our family in prayer.

Partial Obstruction

Unfortunately, we have a new set-back. Because Kylie has been struggling with nausea and because she has been having a lot of output into her ileostomy bag, her doctor ordered an x-ray of her abdomen this morning. The x-ray revealed a partial obstruction. They are really hoping that this obstruction will resolve itself. In a couple of hours, she will have another x-ray and if the obstruction has not resolved itself, they will have to take measures to fix it. I feel like there are some unanswered questions at this time. When Kylie had her ileostomy reconstructed, Dr. Abdessalam looked for an obstruction because she had been throwing up. However, he said that there was not any sort of obstruction. So now, is this a new problem, or could it be that the obstruction was somehow overlooked on Christmas Day and therefore is a continuation of the original problem? I am hoping to have a better understanding of this as the day progresses. Obviously, this means that we will not be going home today. In fact, I am now prepared to stay for a least a few more days. Kaycee brought my computer up to me this morning, so now it will be easier for me to keep all of you posted. It is really tough to be back here and I still can't believe that this is all happening. We are trusting the Lord to take care of us.

Not Home Yet

We are still here at the hospital. Basically, we are waiting for Kylie's appetite to return. She has been struggling with some nausea today. As soon as this passes and she starts eating, they will send her home. She is still dependent upon the fluids for now. As for her new ileostomy, it is all looking great. We have seen some good things happen today...she has been communicating really well with us and is talking much more than she was her last stay. She's been interested in coloring, puzzles, and Candyland. We are so excited. The one great thing about this stay is that she is not in isolation, so we are free to take her our of her room at any time and she doesn't have to gown up. Her favorite thing to do is to ride the little pink car around the floor. We like to go down to the lobby too--she calls it "Hobby Lobby" :) We are really hoping that she will get to go home tomorrow. Please pray for the return of her appetite!

Christmas Day

Yesterday, about 2:00 in the afternoon, Kaycee and I were preparing to leave for our Christmas celebration with his family. Kylie just seemed unhappy. All of a sudden Kaycee noticed that her small intestine had partially come out of her stoma into her ileostomy bag. There was probably 5-6 inches of intestine that had prolapsed. I could not believe that this was actually happening, and of all days, on Christmas Day. I immediately put a call into the pediatric surgeon on call, who happened to be Dr. Abdessalam (the surgeon who originally constructed her ileostomy). Thank you Lord!! He told us to come to the Children's emergency room right away. The drive in seemed endless. Kylie was miserable and began throwing up. By the time we arrived, the intestine was prolapsed nearly a foot. Uncle Nathan came for Carson shortly after we arrived and took him back for the Udd Christmas celebration. Thankfully, a little over an hour after we first arrived, Kylie was back in surgery and Dr. Abdessalam was reconstructing her ileostomy so that this would not happen again. Kylie slept all of maybe two hours last night and was somewhat uncomfortable. The two of us are exhausted today. I pray she can get some good rest today. Kylie's stay here should hopefully be brief (one-two days?) Please pray that she will stop running a fever (anesthesia could be causing it) and that she would start eating. If she could start eating, they would consider letting her go home today. However, so far, she hasn't wanted to eat. In the two days before all this happened, Kylie was beginning to make some really great improvements emotionally and behaviorally. We were so encouraged! Please pray that this ordeal would not cause any set-backs. Kaycee is here with me today and I am so glad. I'm also so thankful for my Aunt Bonnie who is here from Sioux Falls for the holidays. She'll be here through Sunday.

Still Waiting for Improvement

We would continue to ask for your prayers for Kylie. Unfortunately, we haven’t seen any improvement in her behaviors as of yet. Her behaviors are so irrational. There is no rhyme or reason to what she does. Her face is completely expression-less with her actions. There is absolutely no emotion to go along with the action. She does give occasional smiles, and let me tell you, I soak every one of those up. However, for most of the day, she just walks around with a blank look on her face. She has absolutely no interest in playing with her toys. It is almost as if she has forgotten how to play. She just wanders aimlessly around the house. I can remind her time after time not to open the presents under the tree, touch Christmas ornaments, throw food, etc. and I get nowhere. It seems like there is no memory, understanding, or connection that takes place in her brain. It is very discouraging. She doesn’t talk much. However, I am very grateful for the occasional words that I do hear. Her speech seems quite slow yet. What happened to our enthusiastic, extremely obedient, trustworthy little girl? It is so hard to believe that all of this has happened and that this is the same person. We will continue to trust the Lord with all our hearts (Proverbs 3:5) knowing that He is sovereign and in control.