October 22, 2016

Ashtyn has been sleeping so good today and her kidney's are on the mend! She's being blessed with exactly what we asked for ❤️ As she sleeps I wanted to share some of my thoughts and feelings. It's been almost two weeks since we found out Ashtyn's cancer has relapsed. Obviously, it's been quite the two weeks. Our vision of the near future is much different now than it was. This week we were suppose to be in New York. My dad was born and raised in upstate New York. Ashtyn's grandma, grandpa, aunts, uncles, and cousins from my side had planned this trip for a year. Last Tuesday we were planning on flying to New York City for a few days, a place Ashtyn has never been. We were then going to head up to Rochester to visit her great great aunt, walk around Palmyra, see her great grandparents grave and the house her grandpa was raised in, and just enjoy the fall colors of upstate NY. Today we probably would be riding our bikes along the Erie Canal after visiting the Sacred Grove. This week ended up different than we thought. Ashtyn had other plans as well. Several weeks ago she was working on finishing her drivers ed. She turns 16 on November 25th. Three weeks ago as Ashtyn was driving around she said, "Mom, I've been waiting to be 16 since I was 8." It's true. From the time she was little she couldn't wait for her 16th birthday. She mostly looks forward to school dances and driving. In November she was planning on applying to be a volunteer at Primary Children's Hospital helping kids on the cancer floor. She also couldn't wait for January. Ashtyn had a countdown on her phone of how many days left before our Disney Cruise with her stepdad, dad, stepmom, step siblings, and siblings. Side note: When her dad and I got a divorce we promised the kids it would not break up the family more than it had to. Ashtyn and her siblings loved family cruises so we promised we would all go on one together some day. We ended up booking a cruise for April 2013. She got her first diagnosed cancer in January 2013 so we had to cancel the cruise. Finally we were able to plan it for a new time in January 2017. We will have to postpone it again. Well, here we are in the hospital with a new reality... and it's ok. Change is inevitable. We have to just go with it, roll with the punches, and make the most of every moment. At the beginning of the post I said our vision of the near future has changed. However our vision of years to come is the same. After Ashtyn had cancer the first time, this song really hit home for me and is something I try to live by. "In the blink of an eye, just a whisper of smoke, you could lose everything. The truth is you never know. So I'm gonna love you like I'm gonna lose you. I'm gonna hold you like I'm saying goodbye. Wherever we're standing I won't take you for granted, 'cause we never know when we'll run out of time." Time is always running out in whatever phase of life we're in. So I say, live with no regrets. At the end of the day, what really matters is our relationships with others and doing the best we can with what we have.

October 22, 2016

There rarely is a dull day in the hospital, unfortunately. Much of Friday was trying to keep Ashtyn resting as she experiences ICU delirium. I read that about 2 out of 3 patients in ICUs get delirium. 7 out of 10 patients get delirium while they are on a breathing machine or soon after. Well, it's a no brainer why she is delirious. Number 1. Ashtyn hasn't slept well at night for a week straight. That would cause me to be delirious too. She was extremely sick and constantly being woken up, day and night, for one thing or another. 2. Her BUN and creatinine are high because her kidney's aren't functioning properly which could cause delirium. 3. The amount of drugs she's on and having a room without any windows I'm sure affects her sleep cycle as well. What does delirium look like with Ashtyn? Ever since getting her breathing tube out 40+ hours ago, she is restless, incoherent, and talks in her "sleep" regularly. It's exhausting to watch so I'm sure it's exhausting to her not being able to get into a nice deep REM sleep. Yesterday she was moved to a room with a window. She seemed happy in her new room and asked, "Can I walk?" Not yet. "I just need some fresh air." I don't blame her! Last night she was started on a sedative called Precedex to see if that would help the delirium. Crossing our fingers and praying that she'll start getting over her delirium today so she can sleep restfully and feel more herself. Sometimes she notices how out of it she is. By what she says, I know she doesn't like the feeling. With all her effort she said, "You. Are. Crazy." I asked, "Who's crazy?" Her response. "Ashtyn." Though she is commonly confused, at the same time is lucid. One moment she'll say things that don't make any sense and then I can bring her back to earth with questions like, What's your favorite Disneyland ride? "Splash Mountain." Who am I? "Mom." Do you know everyone's so proud of you? "Really?" and then smiles. Along with the delirium, there is also other medical issues being watched and managed. Yesterday she got a blood transfusion and platelet transfusion. In the less than two weeks she has been in the hospital, I have lost track of how many blood product transfusions she has gotten. I've wondered if I should go back and try to count them all. Yesterday she also got a CT scan of her head to see if there was fluid in her brain caused by the bacteria that was in her blood. No fluid was found. She got a chest X-ray which did show fluid outside her lungs and will keep an eye on that. She got an EKG to check her heart rhythm to see if she could take a certain anti-delirium med. The test showed a prolonged QT rhythm so the first drug of choice couldn't be given. I just have to say, every healthcare worker in the PICU is amazing. Today: Please pray she'll start getting over delirium, so she can sleep soundly. Please continue to pray that her kidneys will take a turn around and function to where she won't need dialysis. Please pray she will remain infection free and able to continue her healing processes. Thank you. She couldn't do this without you.

October 21, 2016

It's been 16 hours since Ashtyn's breathing tube has been taken out. She has been very sleepy and seems delirious. Throughout the night her eyes rarely opened and she frequently babbles with incoherent speech. The doctors believe she is still improving though it may not seem as noticeable. Her morning labs showed that her liver is doing good but her kidneys are struggling from not getting enough oxygen during her shock period. When her kidney's don't function properly, her body is unable to get rid of fluid which is effecting her lungs. Also her body isn't able to get rid of the sedation she got in the past which makes it more difficult to wake up. Ashtyn would benefit a great deal if her kidneys would start recovering. Prayers for the day: 1. that her kidneys will start to recover allowing her body to get rid of fluid that is effecting the lungs, and decrease wastes that are building up, preventing the need for dialysis. 2. that she will become more awake and alert. 3. that she will stay free of complications so the healing process will continue. The healthcare team are all still very pleased with how well she's doing 😊 Thank you!

October 20, 2016

On Monday October 17th, because of a bacteria in her bloodstream, Ashtyn went into decompensated septic shock: which is the late phase of shock when the body's compensatory mechanisms (such as increased heart rate, vasoconstriction, increased respiratory rate) are unable to maintain adequate perfusion to the brain and vital organs. The doctors did not expect she would make it through the night. Not only is shock a medical emergency, she also was compromised from cancer and is neutropenic (absence of infection fighting cells). Ashtyn had nothing going in her favor and wasn't expected to live. Once the healthcare team got her stable in her instability, it was just a matter of waiting to see if she could pull out of it. I sat next to Ashtyn in quiet contemplation. My thoughts and feelings went to things I already knew. I knew that God lives. I knew that we come to this earth with a unique purpose. I knew Ashtyn would stay on earth until her purpose was over. I also felt her purpose wasn't over yet and if enough people prayed and showed God how much we wanted her here, she would heal and overcome. That night I slept fine and have been sure ever since. Miracle of the day: Ashtyn no longer needs her breathing tube. This girl's got things here worth living for.

October 19, 2016

You might wonder what it's like for me to watch my daughter go through this. Having the privilege to be by her side day and night, I actually might have more peace than others. I'm able to feel her calmness, watch her progression, and observe the miracles. So how's the family doing? We are happy, hopeful, and at peace. If you were to walk into Ashtyn's PICU room, you would feel a very calm, social vibe of optimism. It is not dark and dreary but rather peaceful and light. I feel joy. How can I not? The hundreds of prayers on her behalf are felt here. Her progression is miraculous. She is doing so remarkably well. Ashtyn's on the ventilator and is needing less and less support. Her life sustaining drug norepinephrine is no longer needed and the epinephrine she needs is getting less and less. She is becoming more and more awake. From time to time she'll open her eyes and look around for a brief moment. Today she tried talking. With a tube down her throat it's impossible to talk so I couldn't interpret what she was trying to say other then the word "mom." I asked her if she was in pain or scared. She shook her head "no". It was cool to see her try to communicate. The rest of the day she slept. Another remarkable thing is that her blood cultures from Tuesday came back negative. Another blood culture was drawn just to be sure but a negative blood culture shows the antibiotics worked at sterilizing her blood and getting rid of the bacteria that was in her system. Everything is amazing about this girl and God is answering prayers. At the rate Ashtyn is going, and without any hiccups, Ashtyn will be out of the PICU and back to the cancer floor within a week (that's just my opinion). So please pray that she will continue the course without any complications. Your love is being felt here at the hospital. Thank you.

October 19, 2016

Brighton High School is honoring Ashtyn at the Brighton/Bingham football game tonight @ 7:00. It is a Camo out, so wear green or camouflage to represent Ashtyn's Army. A table will be set up selling items. A silent auction for a Steph Curry jersey will be auctioned off. Join Ashtyn's Army tonight during the football game and show your support. *pictures from October 12, 2016

October 19, 2016

Today was a day of prayer and fasting, by many, for Ashtyn to stay on this earth with us. Twenty four hours ago I asked for specific prayers that: 1. her body would perfuse blood and oxygen properly to her tissues and organs. 2. her body would begin to maintain a blood pressure so the epinephrine and norepinephrine could begin to be decreased. 3. the antibiotics would start killing her bacteria. 4. her bowels and all organs would be protected. What blessings did I see because of the hundreds of prayers and fasts given for her? Everything she needed. Ashtyn went from being on the path to death to being on the path to healing. She went from having white, cold, pulseless legs and arms to having warm, blood filled extremities. She started perfusing properly. Simultaneously, with a high continual dose of epinephrine and norepinephrine, her blood pressure's remained stable. As the day progressed on, her norepinephrine dose gradually decreased and is being completely weaned off it. This is indicative that her septic shock is getting under control and her blood vessels are beginning to constrict again. Her body is responding to the antibiotics and beginning to kill the bacterial infection. In the process, no detrimental downfalls have occurred allowing the body to start the healing process. We could not ask for better. The doctors are nothing but impressed with Ashtyn's progress and worded it as "remarkable". We aren't out of the woods yet but she is definitely headed in the right direction. Ashtyn's on life support and many things are being done to keep her alive. One PICU nurse is constantly at her bedside while countless others on Ashtyn's healthcare team work together to do all they can for her. Prayer for the day: Ashtyn is extremely susceptible to getting a new infection as well as having any number of complications. Her body has absolutely no reserves to handle any set backs. Please pray that she will heal without any road blocks. That her kidney, liver, and bowels will be well. And that her body will find balance. She's got this because of your prayers.