Day 36

Let's just start with the jumping up and down good news! We got the results of the lumbar puncture showing significant reduction in the white blood cells. This confirms what we are seeing in Kelsey's respiratory and heart rates. When they gave us this news it was tainted with the news that they are seeing something new in the lungs, however, it still needs to be confirmed. They are going to repeat the CT scan tomorrow. If it looks the same as today, they are going to do a bronchoscopy. This makes everyone a bit nervous, because it means anesthetic. The MRI is holding steady...no new disease. We are getting our miracle! We have so many hurdles and such a long road ahead of us. She is still so critical and weak and sick, but we are headed in the right direction. The drugs she's on have such great risks, and her condition is rocky. Her organs, bowels, kidney, pancreas, liver, lungs, brain are all in some state of being not normal. The main goal right now is to keep the course. The brain is still the #1 concern. All other concerns are falling in the wake, but not being ignored. For instance, we have recommendations for the bowel issue. She is at risk now for a rupture. We pray that the easy fixes will work. So for all the above areas mentioned, pray for normalcy to return without any complicated drugs, tubes, surgeries, etc. Pray for all cells damaged during this infection be restored. We still need a miracle. Now, I just found out she has some bladder virus? I'm not sure what this is. Waiting for the doctor to come in and explain it to me. OK, he stopped in and for now it is another thing to just watch. WOW! I was saying to Tracy during dinner(by the way Steph made another good meal for us tonight)(What a blessing!) that what I would like to see when I walk over tomorrow is a complete full blown healing. Kelsey perfectly normal. We just can't get too overwhelmed with all of this. We are still living one day at a time. There was a puzzle started in the family room just outside Kelsey's room which has now been completed. Every time the boys get kicked out of her room for whatever reason, they head to the family room. They just got another 1000 piece puzzle to start tomorrow. Steph is making good headway on her next knitting project. We had two visitors today. Kelsey's Uncle Ridge was at Navy Medical today so crossed the street to say hello. A long time friend Rebecca Ewert who is going to school just a couple metro stops from here came by. It is always good for her to have visitors. It really was fun to catch up. The boys want the computer to watch a video series Steph brought, so I'm signing off for now.
Love,
Mom

Day 36 am

She is still breathing easier & easier to wake up. She is still very critical, however, we are encouraged that these new signs are showing an improvement in her condition. The lumbar puncture is over, so we should have results back by the end of the day. The MRI of brain is this afternoon and should have results for that by the end of the day. As always, giving platelets, blood, insulin, blood pressure med, seizure med, GSF shots, hydration, and electrolytes as needed...constant adjusting going on to keep everything stable. All the big dog drugs are on board. Carefully watching all organs; bowels are posing a bit of a problem so everyone is discussing what can safely be done not to rock her condition. She had a persistent area of pain yesterday, so if we signs that it is bothering her today, then more scans will be done. The waiting is really tiring. It is like hurry up God, but don't we know that God uses every situation to teach and train us. The devotional today was just what I needed to hear for me today. It is very cool that each word of God is useful to us individually in our own circumstance. It is everything to know that He cares and loves us. We feel cared for and loved each day. I am confident that this is His plan. May we walk in faith and trust all through this day.
Love,
Mom

Day 35 pm

Everyone but Tracy and Alex went back to the Inn for a Holiday Party & Cookie Decorating. It was nice to sit down and be waited on for dinner by the Children's Inn Board prepared by the NIH Fellows with staff helping as well. We gathered up plenty of food for the boys to take to the hospital. As you can tell by the picture, dessert was gingerbread cookies with the creating taking place by us. Karly, hands down, was the best cookie decorator. Even though she cannot eat the cookie she took it and created a delicious specimen for her dad. Trent, on the other hand, planned on dumping as much icing on the cookie and then give it to dad to eat. He said let you all decide. She has been sleeping since we've come back. She had been feeling some pain in her right rib/liver area today and then tonight. They gave her some dilaudid. This is of concern because she hasn't had pain since we've been in the ICU, at least not any she had complained about. I'm sure there will be more investigating tomorrow. I pray for a peaceful, restful night. I pray that we may find Jesus in everything tomorrow.
Love,
Mom

Day 35

Stephanie stayed all night with Kelsey. Kelsey was up from 4-8am. Tracy made it over around 7:00 and was able to talk with her. Around 10:30 Neurology came by and woke her up. She was up around 2 hours again. This was a good time for us. She was a bit more vocal. What seems amazing to me today is that her breathing is slower when she is awake. She is really amazing. Doctors seemed pleased that we are holding steady. Again, every day is tentative. Every night, I am not wanting to leave her. I am not sleeping great, but need what I get. This morning, I woke with a start when I saw in my "dream" that her oxygen was dropping. I got up so I could get over to her right away. When I noticed Tracy wasn't in the room, I knew he was with her. That was a relief. I was all in a tizzy about maybe needing to put the breathing tube in, but was reassured by my devotional and then again by a nurse of 40 years that came and visited us this morning that the right thing to do for now is let her be. Today was very uneventful medically but for the family it was great. Tomorrow she has another lumbar puncture and MRI of brain. I'm not sure what I'm feeling. It is going to happen. It will give us some kind of news. I want a miracle!

Having Steph here has been just what God deemed I needed. I told her that I didn't need anything & that I needed to be here with Kelsey, however, just having her here has added so much to each day. It's been great for Kelsey; our conversations have been much more interesting. Kelsey enjoyed listening and adding comments. Now with the family here, she has just found another niche. She cooked lunch for everyone. Tomorrow she has a dinner planned. This is a huge blessing and allows me to spend most of my time with Kelsey. That is what I needed. I know that God is answering so many prayers. I can't even imagine all the different prayers offered up for us, but I know that He is answering them. Our needs are being met. I have answered people when asked what they can do for us during this time by saying, "Just pray and listen to how you are being led." Thank you to all you faithful and obedient brothers and sisters.
Love,
Mom

Day 34

The family arrived shortly after 4:00. Since Kelsey was getting a breathing treatment which required isolation, we ate at the Inn before seeing her. I cannot tell you what a relief it is for them to ALL be here. It is just awesome to be together. It took several hours before we were able to wake her up. Since then, we enjoyed singing in her room, telling some jokes, and making silly faces at her. She hasn't said more than I Love You which is fine with me. What great words to choose to say. She is great at copying faces and gets tickled at especially Konner. I'm getting ready to leave and ready the rooms for sleeping. Pray for another night without the tube. I don't rest at night with this hanging over us. I just hope that I can sleep enough to not get sick. Everyone is really exhausted so may tonight be restful for us all. May she get through another night. Come Lord! More Lord!
Love,
Mom

Day 34

I walked in to see her this morning to find no tube in overnight. Yeah! Just need another 5-8 hours where the family can see her so she can talk. Each day we move forward or have a sense of improvement is good for our hearts. Still hoping for a miracle. She is certainly remaining stable today. Breathing is very heavy, but she isn't gasping for air. I had trouble sleeping last night. My eyes are puffy. My head is hurting. I'm sure my body is tense, because the situation is tense. This morning in the shower my mind would wonder to cleaning out her room. I prayed for God to quit letting these negative thoughts intrude into my mind. May my mind be filled with hope and a future. Come Lord! More Lord!
Love,
Mom

Day 33

Had a very hard meeting with the doctors, but we made a plan that everyone is comfortable with. They will give her a breathing tube when they feel it is necessary. It actually was going to happen right after the meeting then she surprised me and everyone this afternoon. I woke her up right after the meeting. She engaged us, she talked, her eyes were open. We went through the gift box she received today from Brandi and family. The box of stuff was awesome. We went through every item, she approved! I loved everything...perfect stuff! In fact, she picked out the purple nail polish, and Steph painted her toenails. It gives her a focal point when she is awake. I don't know what will happen tonight or tomorrow morning before I get to her room, however, my desire would be for her to make it until tomorrow afternoon without the tube so I could wake her up in time for her family to engage her. We saw a "tiny miracle" today. More Lord! Come Lord! This is not something anyone has seen before. Her infection is extremely rare, the amount of areas infected in her brain are worse than they have ever seen. The recovery for this is not expected to be very good. What a perfect time for a miracle. It would certainly give God the glory. That is where we are at right now. Pray for the family as they see a very sick Kelsey. It will affect them. Praise God that everything just fell into place for everyone to come. Once again, Wabash College, Tyler's school amazed him today. Before he was called or he even read the blog this morning, his professors knew what was going on, contacted the Dean of the school who approached Tyler as he got to class this morning. They told him it was ok to go; they would deal with finals later. I hope Trent had as much success. We will soon be together...maybe 18 hours. Please pray for that miracle. Now is the time! It is crucial to see improvement soon. Thank you for all your prayers and encouragement. As always, we are so thankful.
Love,
Mom