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.
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7 comments:
Jill-
Just now had time to get on computer and get "in the loop". Have been praying unspecifically, but it is good to have a prayer focus for you all. Having worked with kids who have experienced bad stuff in life, I can tell you that God is so good and kids are so resilient. Hang in there and you try to get some sleep too! We will keep you in prayer and praise God for the improvements seen so far.
Amy Williams
Praise God for His provision of Dr. Vanderhoof. Dr. Vanderhoof (or his son) consulted on Jenny when she was an infant and was at Children's Hospital.
We will pray your specific requests. Thank you for sharing your heart with all of us.
1 Peter 5:7 Cast your cares on Him for He cares for you.
Love, Tom and Cindy
Good Morning,
Jsut spent some time reading your blog after not being able to for several days, I started now and worked backwards andsaw the improvement before the agony, if only we knew the end of the story first but it is in the writing and the experience that we see God's hands perform the miracles. You are such great parents with so much love for your kids, you interact with them in such kindness and love. what a joy to witness that first hand. Be encouraged the God knows the end of the story and it is always in His soveign hand. what a great and big God we have, and so thankful that although we can't be in the room our prayers are making their ways wherever your sweet Kylie goes. Oh this is so very hard and our heart are burdened but I am so encouraged with your faith and trust walk I see throughout your blog. Sweet Kylie will be back, some of that is the meds talking and just the stress her body has undergone. We will continue in prayer and see what miracles we can witness first hand. Prayers and hugs, Chris and LuAnn
I will look into the accommodations at Children's hospital here in Boston. I know people who work there and a good friend of mine has spent many weeks there with her daughter. I hope you can come to Boston for her motility treatment and wherever that may lead. We are so happy for the improvement but will continue to pray for Kylie's devastated and confused spirit. If she continues to improve physically, I'm sure she will soon be back to her own sweet personality.
Kaycee and Jill,
I don't have much but what I have I want to share. Yesterday I read out of Jeremiah 32 and verse 17 ministered so much to me. It reads "Ah Lord God! It is you who has made the heavens and the earth by your great power and by our ourstretched arm! Nothing is too hard for you." May God continue to outstretch His arm to you and Kiley and Carson. Know that you guys are not "holding the rope" alone. It is a privilege to hold the rope with you guys in prayer and ministry through this season of life. Cari and I were greatly blessed by hanging out the other night. Pastor Chad has inspired me to again pick up the torch of physical fitness so Kaycee we have another person to prod us along on the 40 pound weight loss challenge! :-)
Fighting for you,
Matt, Cari, Cade and Ava Rasmussen
Hi Jill,
I know that Kylie's and Connor's situations were/are very different, but the only two things that he talks about now from being at Children's is the popsicles and Dr. Joseph Snow and how funny/kind he was to him. He never mentions the pain or long days and nights. I pray and know that God will help Kylie focus on the few positives that exist in these types of situations.
Jill,
Hi! This is Therese (Ed's wife from Bob's Co.) :) We are so glad that Kylie is doing better....just wanted to encourage you as far as Kylie recovering emotionally. Our oldest, Kristin, was hospitalized many years ago (though it still doesn't seem like that long ago!) when she was six with a serious strep infection that settled in her elbow joint. (It looked like someone had stuffed a LARGE softball in there!) She had several surgeries,(By Dr. Raynor too!) multiple nasty procedures, where I think I cried ( but not in her sight!) as much as she did. She also got very withdrawn and wouldn't even respond to her favorite people that came to see her...I too, was frightened to see that happen. But once we got home, very quickly she got back to her old self, and now mostly just remembers the kind things that people did for her during that time--the gifts, the visits...We still laugh with some friends of ours who found out that her favorite meal at the time was soft tacos from Amigos, so they brought her two. The first thing she said when she opened the bag was "Where's the ranch?" At 21 now, she a little more gracious! :) We will be praying for you all!
Therese and Ed Pille
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