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.

Future Plans

Yesterday, Kylie had her central line taken out at the Children's pediatric surgery clinic. We made the decision to have her come home with it in just in case she wasn't eating or drinking well. However, her appetite has been so great. Her strength continues to improve and with that she makes things a lot busier. Now that she is walking all on her own (although a little tipsy), I have to watch her like a hawk. I have to be sure she's not tearing ornaments off the tree and throwing pieces to the nativity, among other things! I still can't believe this is our Kylie. It is so weird! It's as if I have a child that has never been trained or disciplined in her life. I am trying really hard not to get too discouraged about it, but it is getting harder. I just want my little girl back.

Our pediatric surgeon has decided he would like us to travel to the Nationwide Children's Hospital in Columbus, Ohio for Kylie's motility testing. They would like her large intestine to heal for six to nine months. So, we anticipate that we will make the trip next summer. The doctor we will be seeing is Dr. Carlo DiLorenzo, a world expert in GI motility. People travel from all over the world to get help from him. Ultimately, Kylie will have to have a second surgery. However, the type of surgery she has will be based upon the results of the motility testing. It could be that they will have to remove her entire large intestine or just part of it, we'll have to wait and see.

It has been so fun to have Carson home. Kaycee took Monday and Tuesday off of work, so we had some good times as a family. Today, Carson went back to school for the first time in weeks. It will also be his last day before Christmas break. We thought he would have fun seeing all of his friends one last time before Christmas. He absolutely loves school and his teacher has been so supportive through Kylie's illness.

Adjusting to Life at Home

Kylie continues to do really well at home here. She’s doing great with her ileostomy and we are all adjusting to the new lifestyle. She is eating and sleeping great! Physically, she is doing really well too. She needs assistance from us when she walks, but she bears most of her own weight and takes steps on her own. It has been amazing to see what being home has done for her physically. I think that the biggest frustration/concern for Kaycee and I is Kylie’s continued strange behaviors. Her pupils are still very dialated which would seem to suggest that she is still going through withdrawal from all of the drugs that she was on in the hospital. Her behaviors remind us of that of an eight month old. She cannot be trusted. If I would lay her on the couch, I don’t doubt that she would roll off. She doesn’t understand that touching a hot pan would burn her. If I give her a bowl of crackers, she’ll grab a handful and then drop them all or try to stuff all of them in her mouth. She throws and drops food like crazy. She makes herself known very well with all of her screaming too. In spite of frustrating her parents, she has given us some good laughs. Her speech is continuing to improve slowly. It seems like her words are slow in coming out, which I’m guessing might be another effect of the steroids or drugs. It is so hard to believe that our sweet, completely normal little girl could take on these behaviors. We are trusting our Great Physician with Kylie’s behavioral needs and we would sure appreciate your continued prayers for her.

My wonderful husband has been an incredible help these past couple days since we’ve been home. When we came home from the hospital, you’d have thought that we’d lived somewhere a year from all the boxes and bags we hauled in. Kaycee was so great about helping unpack and helping with Kylie’s needs. We spent yesterday settling in, relaxing, and decorating for Christmas. It was a good day! We are going to get Carson tonight from Kaycee’s parents. They have been so sweet to keep him for the past couple days so that we could adjust to being home with Kylie. Kaycee’s parents have been absolutely amazing. Thank you Mom and Dad for all you have done to help us! Thank you again for all the time you have invested in Carson. We love you!

We're Home!!

It is the most wonderful feeling in the world to be home after 22 days in the hospital!! In the few hours that we have been home, we are already encouraged with Kylie's progress. Being home is going to be the best medicine for her. I will continue to post updates as to how she is doing. Again, thank you from the bottom of our hearts for all of your prayers for Kylie. The Lord is SO good!

Wonderful News!

This is unbelievable…the team of pediatric surgeons came in this morning and said that Kylie is doing so great that she can go home tomorrow (Saturday)!! This is the plan assuming she doesn’t have any set-backs today. She has made some really great progress this week, but I didn’t think it was enough to send her home. This really took me by surprise since she can’t even stand up on her own and overall, she just isn’t herself yet. They have said that they aren’t worried about this and that she’ll regain her strength in time. We are SO excited!! There’s no doubt she has A LOT of recovery ahead of her. However, there couldn’t be a better place to recover than at home! The Lord is SO good and everything that we have been through in the past three weeks has shown us how awesome He is. He has given us peace, comfort, and the strength to carry on. As a good friend of mine said to me, “Without the grace of God, you would crumble. Crumble in pain, heartache, worry, fear, and discouragement.” It is absolutely true. We could have not made it through this time on our own strength.

Last night, Kaycee and I took Kylie for a ride in a little pink car through the lobby area of the hospital. It was so great to get her out of her room and completely off of her floor for the first time in three weeks. It had to be so refreshing for her.

Longing for Home

Christmas is my favorite time of year and it is so disappointing to be missing out on all of the festivities of the season while up here in the hospital. I am so anxious to go home and decorate for Christmas and do some holiday baking. Kylie and I talk everyday about Christmas and what we will do when we get home. I really attempt to make home the focus of our conversations. Everyday, I remind her that she’s at the hospital so doctors can help her tummy get better and that we’ll go home when she gets stronger. We are very hopeful that she will be home by Christmas and we’d appreciate your continued prayers for Kylie’s physical strength.

Kylie is doing really well with her ileostomy. She honestly doesn’t even seem to care or notice the bag. With all of the tubes and procedures she has been through, this seems like it is nothing to her. The ileostomy nurse comes in every day to give me a little teaching session so that I will know how to care for her when she goes home. I would compare the process of changing out the bag similar to changing a diaper, but even a little more unpleasant. As unpleasant as the circumstances might be for me, I must strive to be positive for Kylie. I was really dreading the first time I had to change the bag. However, with today being the third day of practice, it is only getting easier.

I have seen some good improvements in Kylie’s speech today. She’s been speaking much more clearly and putting 2-3 words together occasionally. Smiles haven’t been nearly as difficult to get lately and she’s continuing to support herself nicely in the sitting position. Behaviorally, she is still doing some weird things. However, I’m not too worried because the doctors don’t seem to be real worried. They seem to think that her behavior is as a result of her ICU stay as well as the medications she has been on. She’s had some trouble with wanting to put small toys in her mouth. This is so funny because even as a baby, she was never one to put things in her mouth. The way that she handles a toy reminds me of a baby who is just learning to hold a toy. She can’t grasp them very well and she drops them easily. With as sick as she’s been, I guess this shouldn’t be surprising to me. I am so grateful for the physical and occupational therapists who have been working with her daily.

Good Laughs

Kylie has given Kaycee and I some good laughs in the past couple of days. She is doing just a little bit more talking. However, lots of the words that she says are really random. She’ll be laying in bed and without any expression and out of nowhere she’ll say, “french fry” or “Candyland”. It is really funny but at the same time, a little disturbing. We wish we knew exactly what might be causing it…medications? trauma? Yesterday, during her physical therapy session, her therapist was helping her sit on the edge of the bed and blowing bubbles so that she could practice reaching for them. Staring up at a bubble with a blank face and drawn-out voice, she said, “CHHHHOCOLATE”. It was so random that Kaycee and I started cracking up. She is a huge chocolate lover (she takes after her mom), and we have given her some chocolate candies in the past 2 days. However, why those words came out when they did, I have no idea. Funny girl!

The Christmas season has brought lots of visits from groups around Omaha during our stay here at Children’s. This past week, we’ve been visited by the Omaha Firefighters, NE State Troopers, Omaha Beef football team, UNO girls basketball team, and Santa. They usually have at least one group visit each day, and of course they bring gifts for the kids. I think it’s so great that they do this.

This morning, I sat Kylie up in her bed to eat some breakfast. She sat completely unsupported—yeah!! and totally devoured her piece of toast with peanut butter and jelly. This is the most she’s eaten and we are really excited about this progress. In a little while, physical therapy is coming to get Kylie and will take her down to a therapy room today. This will be so good to give her a change in her environment. We also received permission from Infectious Disease to take Kylie on wagon rides down in the lobby area. I am hopeful that we’ll get her out this evening.

Recovering Nicely

Kylie continues to do really well since her surgery yesterday. The nurses are really great about staying on top of her pain medications. She has seemed quite comfortable and we are so thankful! I assumed that she might sleep for a good portion of the day after surgery, but she was awake for most of the day. We’re so excited that she is now on a regular diet and can eat anything that she’s hungry for. Last night, she ate a saltine cracker, a graham cracker, two chocolate candies, and five Doritos…real healthy, huh? We were so thrilled that she was eating, we didn’t care what she ate. We are praising God for the amazing night of sleep Kylie had last night. She slept solid from 9pm until 6am!! This is the most she has slept since arriving here at Children’s.

Today looks like it is filling up quickly already. She will have a physical and occupational therapy session. I can’t believe how thin and weak she is. She can’t even sit up on her own yet without flopping over, so I am really thankful for the physical therapy gals who are working with her. At this point, if anything keeps us here, I think it will be her lack of strength and struggle to eat. The Lord has carried us so far. As I sit and think about how sick Kylie was three weeks ago and where she is today, our hearts are overflowing with thankfulness and gratefulness. It is so evident that our gracious Heavenly Father has heard our prayers and cries for help. We will continue to place our trust and hope in the Lord as Kylie recovers.

Thru Surgery!

Psalm 115:1

Not to us, O Lord, not to us

but to your name be the glory,

because of your love and faithfulness.

Kylie's surgery went wonderfully! We give all the glory to Him! They took her to the operating room about 7:15 and by about 8:15, she was in recovery. We just got back up here to our room and she's resting peacefully. Dr. Abdessalam performed the ileostomy using a scope. He inserted the scope right next to her belly button and made the cut in her intestine. Isn't it amazing how technology has made surgery so much less invasive? I didn't even know until this morning that they were planning to do her procedure using the scope. I will attempt to give you a general explanation of the ileostomy procedure...To construct Kylie's ileostomy, her surgeon brought part of her small intestine through her abdominal wall. This new opening on the abdomen is called a stoma. So, she basically has a loop of small intestine on the top of the skin on her abdomen. She will now wear a protective pouch over the stoma and her stool will travel from her small intestine into the ileostomy pouch. Her large intestine remains in the abdominal cavity, but will not be functional. They want the large intestine to heal for 6 to 9 months and then we will pursue motility testing. Thank you for all of your many, many prayers for Kylie today.

A Slow Sunday

Yesterday, Kylie made some great steps emotionally. However, today was a day of regression. I was really hoping to hear her talk again. We are asking the Lord for patience as this is going to be a long process of healing. Kylie cried a lot today and we think that she is having pain somewhere, most likely some abdominal cramping. Thankfully, the Morphine seems to be helping some.

I am so thrilled that we were able to get an order today from her infectious disease doctor to take her out of her room. She has been in isolation since arriving here at Children's. I think she has been getting a little depressed having to stay in her room 24-7...who wouldn't? Tonight we loaded her up in the wagon and took her for a stroll around 4th floor. It was so great to get her out and I know that it had to be very therapeutic for her. Since she's been back in her room, she's been eating ice chips. This is the first day in two weeks she has wanted something in her mouth. What a praise!

Tomorrow is the big day and we will sure appreciate your prayers tomorrow morning as Kylie is in surgery. The surgery is still scheduled for 7:00am and should only last around an hour. Please pray that wisdom would be given to her surgeon Dr. Abdessalam, for comfort and ability to sleep after surgery, and for a speedy recovery.

Praises and Blessings

Today is a day of thanksgiving and praise! I have been greeted with smiles from Kylie today! They have been slow in coming, but I knew they would. As I was reading her a book this morning, she said, “a kitty”. Those are the first words she has spoken in over a week. What a blessing to hear her voice. Right now, she is playing with her Cinderella balloon. She holds onto the string and draws the balloon towards her. Then, she lets go and watches the balloon pop up. She’s been entertained with this for at least thirty minutes now. What a great form of therapy for her arms too.

We had some very special friends from our church visit us this morning. They brought Kylie a beautifully decorated Christmas tree and a laundry basket overflowing with gifts. We are SO excited to be able to get into the Christmas spirit and enjoy the season, even in a hospital room. Her room looks so bright and cheery now! I am absolutely overjoyed and cannot tell you much this means to us. Kylie will have so much fun opening all of the gifts. We’ll spread the opening process out so that each day she can look forward to opening a couple gifts. Thank you to all of you, our church family, at the E-Free church in Fremont for the beautiful Christmas tree and gifts. We love you guys!

We are also thankful beyond words to Stan and Vi Udd, Kaycee’s parents, for taking care of our precious Carson. Mom and Dad, you are such a blessing from the Lord. Carson, we love you and miss you dearly during these days at the hospital, but you couldn’t be in better hands! Kaycee’s parents have been caring for Carson for the past two weeks. He is doing great and loves his Opa and Oma to pieces! He couldn’t be a happier boy than to be where he is right now. He’s getting more than his fill of the country, lots of his cousins, kittens, and tractor toys. He’s been eating and sleeping great…better than he does at his own house. We are always anxious for his visits and it is good for Kylie to see him too. We look forward to seeing you this evening Carson!

Another Full Day

Today proved to be another full day for Kylie. She rode the wagon down to radiology for an x-ray and was back in her room before the sun had risen. The results from the x-ray looked great. Next, we had our regular visits from the doctors that are following Kylie's case. They were again pleased with her progress. The ileostomy nurse came in today and explained Kylie's procedure to us. I hope to give all of you an explanation in the next couple of days. We also had visits from physical therapy and occupational therapy. Kylie is not strong enough to walk yet and also needs assistance with sitting up. We are thankful for the suggestions they have given us to help Kylie regain some strength. Kylie's surgery is scheduled for 7:00 am on Monday morning. This is earlier than we had expected, so we are thrilled.

Kaycee is spending the night with Kylie tonight. We would appreciate your prayers for a restful night for the both of them. We just found out tonight that Kylie's sleep deprivation and restlessness are as a result of the steroids she is on. Poor baby. Our hope and prayer is that by Tuesday she will be finished with the course of steroids.

Continued Improvements

Wow, it has been a really busy day. Kylie is out of PICU and now up here on 4th floor!! This morning, she had 4 tubes pulled…yeah! I cannot believe how much freedom that gives us to hold her now. It was nearly impossible to hold her the entire time she was in ICU. Today is also the first day she doesn’t have swelling throughout her body. Her abdominal distension is incredibly improved today too—praise the Lord!

Kylie’s gastro-intestinal doctor has been following her through her stay here at Children’s. This past summer, Kylie had a number of tests to try and diagnose her underlying problem. However, each and every one of those tests came back normal. Yet, we knew that something was still very wrong. Her GI doctor, Dr. Prestridge, was absolutely puzzled and Kylie’s situation remained a mystery. Yesterday afternoon, Dr. Prestridge brought in one of her partners, Dr. Jon Vanderhoof. Dr. Vanderhoof is rarely in the area because he travels all around the nation speaking. However, he happened to be in Omaha yesterday and came to visit Kylie. He was such a kind man we felt so privileged that he would take time to look into Kylie’s situation. After reviewing her case, he told us that only ONE case similar to Kylie’s came to mind…a little boy in Kearney, NE. This little boy traveled to Boston, MA to undergo motility testing. So following Dr. Vanderhoof’s visit with us, he visited with the group of pediatric surgeons concerning the next step for Kylie. They were all in agreement that Kylie needs to have surgery. So, on this coming Monday (December 8), she is scheduled to have a procedure called an ileostomy. Tomorrow morning, an ileostomy nurse is coming to visit with us. She will explain the procedure and answer any questions that we have. Following our meeting with her, I will be able to explain the procedure a little more clearly to all of you. The second part of the plan for Kylie will take place somewhere around two months from now. We will be traveling to either Cleveland, OH or Boston, MA to pursue motility testing for Kylie. Again, this test will help detect whether just a part or the entire large intestine is not functioning. Unfortunately, this testing is not available anywhere nearby, so we will have no choice but to travel. This is a little overwhelming to think about. Yet at the same time, our hearts rejoice with how the Lord is answering our prayers. He is giving wisdom to doctors and He is taking care of Kylie.

Now that Kylie is stable medically, we are very concerned with how these past two weeks have affected her psychologically. As I have commented in my updates for the past two days, we have not been able to get Kylie to smile or talk at all. She will not even cooperate by nodding her head to answer my yes or no questions. When the nurses change her dressings, they have to pull large sections of very sticky tape off of her skin. She just flinches with these dressing changes but will not cry or make a sound. My heart is so heavy tonight with how this tragedy may be affecting her. I am working so hard to try to explain to her why she is here and that we will go home when she gets better. My heart aches for all that she has been through in the past two weeks. Please pray that Kylie will recover from these devastating events and that the Lord would calm her little heart and bring her peace. She also desperately needs sleep. Kaycee said she slept no more than one hour last night and she hasn’t slept at all today. She is SO sleep deprived. Again, thank you for upholding Kylie in your prayers.

Progress

Kylie had a fairly good first night off of her breathing tube. Her poor little throat has been so raw and sore as a result of the breathing tube. However, thanks to the Morphine, she has been much more comfortable. She is awake and alert today but still isn’t talking yet, which is understandable. I’m waiting anxiously to hear that little voice. We are so encouraged this morning with the progress that the doctors are seeing. Overall, they feel that her large intestine is healing nicely. The fluid in her abdomen seems to be decreasing, but the distention remains. Based on the results of the abdominal x-ray from early this morning, it appears to be air as opposed to fluid that is causing the distension. So, that is positive. On another positive note, her chest x-ray looked good and they are considering removing her chest tube in the next day.

Now that the healing of the large intestine is underway, the pediatric surgeons are beginning to contemplate the next step for Kylie. The surgeons are researching the possibility of motility testing. We don’t understand why Kylie’s colon is not functioning properly. However, we do know that she has not had good motility since birth and that this long-term problem has finally come to a head. We sure appreciate the surgeons conservative approach in trying to help Kylie. The purpose of the motility testing would be to determine if it is only a part of the colon or the entire colon that is not functioning properly. Doctors are checking into whether or not motility testing would even be a possibility with the condition that Kylie is in and if it is even available in Omaha. Please pray that the group of pediatric surgeons would be given great wisdom as to what the next step is for helping Kylie.

There has been some talk of moving Kylie out of the ICU in the next day. We have mixed emotions about this. We are so grateful for the improvement that Kylie is showing, but we would miss the great care and the terrific nurses that have watched over her nearly every minute of the day here in the PICU.

As I sit up here in the hospital each day, I SO look forward to reading the notes of encouragement that all of you have sent. I wish that I could respond to each one of you personally. Please know what a huge blessing each and every one of you are to me...even to those of you who I have not met before.

The Tube Is Out!

Kylie's breathing tube was removed this afternoon about 3:00 and she's doing great! The process went so smoothly and quickly, better than I ever expected. Oh how the Lord watched over Kylie and comforted her. We are so happy to see our little girl awake and alert. We're still waiting for her talk and smile, but that will come with time.

Waiting

The past twelve hours have been very discouraging for Kaycee and I. However, our hopes are renewed this morning. Thank you Lord that our present sufferings are not worth comparing with the glory that will be revealed in us (Romans 8:18).

The c.diff colitis seems to be improving but the abdominal distension is not. This is what baffles the doctors and what indicates that there is still an unresolved underlying problem. For the time being, Kylie will stay sedated, intubated, and ventilated. An ultrasound has been ordered for this morning to look for any new fluid accumulation.

If there is no improvement in her abdominal distention in the next few days, the surgeons seem to be weighing the possibilities of surgery. This is an ongoing discussion with the entire pediatric surgical team, and we appreciate their careful deliberation on Kylie’s case. Please pray that they will be able to make the right decision for Kylie regarding surgery.

She continues to rest peacefully this morning, the waiting continues, and we again express our gratitude for your prayers.

Another Prayer Request

We are asking for your prayers at this moment. Kylie’s abdominal distension is increasing. Something is just not right and we are very concerned. We are currently waiting for the pediatric surgeon to come and evaluate her. Please pray that wisdom would be given to Dr. Raynor and that relief would be brought to Kylie. With the current circumstances, Kylie remains sedated and on her breathing tube.

Breathing Tube Removal Today?

Today the doctors are weaning the settings on Kylie’s ventilator in hopes of getting her off of it later today. Basically, they are letting Kylie tell them if she if ready to take over her own breathing. Kaycee is working today but will be here when they are getting ready to remove the tube. I am also so thankful for my Aunt Bonnie who has been right by my side for the past week. She is a NICU nurse in Sioux Falls and has been an incredible help and support to me.

I have attached a few pictures of Kylie before her illness. I can hardly wait for the day I see her beautiful smile again.

New Prayer Requests

I don’t have much to update all of you on this morning, which is good! Kylie remains stable and fluids continue to drain. She occasionally wakes up a little bit when the sedation starts to wear off. These periods of time don’t last for long thankfully because the nurse gives her another dose. However, I absolutely dread the times as I have to watch her struggle. Her little hands are tied down so that she doesn’t pull her breathing tube out. These difficult moments are good preparation for what might happen tomorrow. It sounds like doctors would like to remove her breathing tube tomorrow and take her off of the ventilator. The nurses have prepared us that this is a very difficult time as they will stop her sedation and allow her to completely wake up and breathe on her own before the breathing tube is removed. This can be a 3-4 hour process and will take both Kaycee and I to comfort her as she fights the tube before removal. These will be heart-wrenching hours. Please pray that Kylie would be able to breathe adequately on her own and will not have to go back on the ventilator. Secondly, pray that Kaycee and I would be able to remain strong as we watch our daughter struggle. Thirdly, please pray for our dear Kylie to be comforted by her Heavenly Father. I am so concerned that Kylie could be damaged emotionally from this experience. Please pray that these memories would be erased from her little mind.

So many of you have asked how you can help us. We are SO thankful for all of you who care so much. I feel that the time that we will most likely need the most help is when we go home (which doesn’t look it will be anytime soon). However, when we do get to that point, I am thinking that it would be helpful to have help with Carson, running errands, etc. I will worry about that when the time comes. It is our hope and prayer that Kylie could be home by Christmas. Would you pray this with us?

A Stable Day

Kylie has had a restful and stable day today. Thankfully it has been slow and uneventful. The fluids continue to drain. From what we understand, the plan is to keep Kylie sedated and on the breathing tube for 2-3 more days. Hopefully, by then the excess-fluid issue will be under control. We would appreciate your prayers specifically for the healing of her colon. Her colon needs to stop weeping or oozing fluid from the wall of her intestine. This will enable her fluids to normalize. After this takes place, doctors will be able to proceed again with trying to diagnose the underlying problem.

A New Day

I live for the freshness of each new morning these days. The nights just seem so endless. Kylie had her very first restful night last night. Obviously, it was due to the sedation they are giving her. I can't tell you how relieving it is to see her resting peacefully. Her care here in the PICU is wonderful! It is very different from her care on the med/surg floor in that it is constant. She is watched and monitored very closely by her nurse and the intensive care doctor. This is such a relief for Kaycee and I.

The fluid in her body is continuing to drain successfully. Since her tubes were inserted, they have drained over 1.5 liters! Her tummy is much less distended and much softer. Thank you Lord for this progress!!

The Lord is sustaining us in these long and difficult days. I am reminded in Jeremiah 32:17 that NOTHING is too hard for our great God. He is capable of doing immeasurably more than we can ask or imagine. We continue to lean on His everlasting arms.

PICU

Kylie has made it through her procedure. She did great and they were able to remove some fluid. Her doctor was hoping for more, but we are thankful for what he did remove. Our prayer is that the tubes he inserted will continue to drain more fluid from her chest and abdominal cavity. She is on the ventilator here in the PICU and is resting peacefully. The plan is to keep her on it for 24-48 hours. I'm so grateful that they have her sedated while she is on it. She had such an unrestful past 12 hours struggling to breathe that we are so relieved to see her resting peacefully.

Urgent Request

Kylie's cat-scan this morning revealed a large amount of fluid in the abdomen which is called "acites". Her lungs also have fluid involvement. Doctors believe that the fluid is leaking from her large intestine into the abdominal cavity and therefore pressing on her lungs. The pediatric surgeon is taking her to surgery early afternoon to insert tubes into the abdomen and chest cavity so that the fluid can drain. Due to Kylie's serious condition, the plan is to move her to ICU following the procedure. Please pray for a successful procedure and an available room in ICU.

A Rough Night

My mom stayed with Kylie through the night last night. At about 5:00 this morning she called me at home and asked me to come up. Kylie had slept maybe one hour last night. She had an extremely restless night. Her abdominal distension increased which caused her breathing to become more rapid and shallow. Because of her grunting and coughing, doctors decided to do a chest x-ray. They did find fluid developing in one of her lungs. She will be going for a cat-scan very soon. Oh dear Heavenly Father, please bring comfort to our little girl and relieve her distress. Calm her heart and bring her peace. You are our strong shelter in times of trouble.

Psalm 91:1-2

He who dwells in the shelter of the Most High

will rest in the shadow of the Almighty.

I will say of the Lord, "He is my refuge and my fortress,

my God, in whom I trust."

Happy Thanksiving

Psalm 100

Shout for joy to the Lord, all the earth.

Worship the Lord with gladness;

come before him with joyful songs.

Know that the Lord is God.

It is he who made us, and we are his;

we are his people, the sheep of his pasture.

Enter his gates with thanksgiving

and his courts with praise;

give thanks to him and praise to his name.

For the Lord is good and his love endures forever;

his faithfulness continues through all generations.

Happy Thanksgiving to all of you! We are so thankful to the Lord today for our little girl and for the gift of LIFE! We are thankful beyond words for all of your many, many prayers and words of encouragement during this past week.

Today has been a fairly slow and relaxing day so far. Kylie seems to be a bit more awake today. She is still incredibly listless. She's too weak to walk and doesn't talk much. Any sort of a request she makes warms my heart. I SO miss hearing her little voice. It has been over a week now since I have seen her smile. I am eagerly awaiting that first smile! Her fever has gone down, so that is a huge praise. I believe it was about 99 this morning. The doctors are still really trying to balance her fluids. Her tummy is about the same in size today...still VERY distended. She doesn't complain of it hurting but it looks like it must feel so uncomfortable. Our biggest prayer request for Kylie right now is that her large intestine would heal and that the medication would be successful in treating the colitis.

Background

Welcome to Kylie's blog. My goal in this is to make it easier to update all of you. For all of you new to Kylie's medical situation, let me give you a little background...

Kylie woke up with a fever and not feeling well on Wednesday morning, November 19. She had some GI symptoms, so I assumed she had a little GI bug. By Friday, she was completely listless and lethargic, to the point she couldn't support her head well on her own. She was very pale, had not eaten since Tuesday, and was still running a fever. I just sensed something was very wrong. I got in with our pediatrician on Friday afternoon and they immediately admitted us to Children's Hospital. She was extremely dehydrated but they were also very concerned with the source of her fever.

When we first arrived at the hospital, they did a blood test to test for CRP (c-reactive protein). They determined that she had a non-specific type of inflammation occurring somewhere within her body. For this test 0-1 is in the normal range, 1-7 is the range for a general infection but Kylie was way beyond this at a 27. So, we knew something was very wrong. They attempted to do a lumbar puncture that evening which was unsuccessful. However, they repeated it the following morning and succeeded. We were so grateful to the Lord that they ruled out meningitis. In the next couple days that followed, Kylie's situation posed a real mystery to all of the doctors. She did not demonstrate any improvement with the fluids and the non-specific antibiotic they put her on. Different teams of doctors began following her including: infectious disease, nephrology, gastroenterology, and pediatric surgery. Doctors began looking into the possibilities of:
- cystic fibrosis manifesting itself with gastro-intestinal symptoms
-viral panel to include: mono, epstein barr virus, CMV
-giardia

On Monday the 24th, Kylie had an ultrasound of her abdomen. The ultrasound provided us with a piece of this puzzle. The ultrasound concluded that Kylie has severe colitis or inflammation of the large bowel and a lot of fluid distension. We also know that Kylie has tested positive for a bacteria in her intestine called Clostridum Difficle (c.diff). They currently have her on an antibiotic for the c.diff called Flagyl. It can take up to 10 days for this to help her from what I understand.

Some of you know that Kylie has had some GI issues ever since she was born. She has always had a very distended tummy and has always had trouble passing stool. For so long, I just thought it was a big toddler tummy. This past summer, it worsened and we went to see a GI specialist. She had numerous tests and all of the tests came back normal. The tests concluded that everything in her digestive system is normal anatomically. They also did not find any inflammatory bowel diseases or allergies to foods. The GI doctor felt she tested for everything she could possibly test for. So, due to her underlying GI problem, it makes everything that is occuring now very complex. Are these two problems related? This is our big question. It seems that more doctors are believing that they are.

Kylie's pediatric surgeon thinks that because her colon has not been functioning properly, she developed the c.diff bacteria. The lack of motility caused an overgrowth of bacteria. Kylie's poor little tummy is just massive. She seriously looks like she is 9 months pregnant. Her pediatric surgeon has said that if her intestines do not start healing and she does not improve, he will have no choice but to do a temporary ileostomy.

We also have heard that Kylie's sweat test for cystic fibrosis, the viral panel, and the test for giardia have all come back NEGATIVE.

Last evening, the pediatric surgeon put a central line in so that Kylie can receive nutrition. It has been over a week since she has eaten anything! We are so thankful that the procedure went well!