October 24, 2016

As Ashtyn is recovering from septic shock, it's been 3 steps forward, 1 step back. That's pretty good odds in my opinion. She's getting there. A few days ago her kidneys were not functioning well. Her BUN was 80. Once the level hits 100, they consider dialysis. She also had 8 liters of fluid that she had retained in her body. Her hands, arms, face, eyes, and really everywhere else were puffy. The kidney doctor wanted to see a urine output of 1 to 1 1/2 liters of fluid a day. Hundreds of prayers were said to specifically help Ashtyn's kidneys. After a 24 hour focus of prayers for her kidneys, rapid improvements were seen. In fact, her body exceeded the 1 1/2 liter fluid a day output. Diuretics were quickly not needed to help her body get rid of fluid and was even given extra IV fluid to offset her urine output to make sure her body doesn't get dehydrated. Her kidneys are doing well. Now her liver is in need of prayers and attention. In the last several days she has had upper abdomen pain. A lab value called bilirubin doubled from 10-20 in probably 16 hours. A common cause for an increase in Bili is a blockage of some sort in the liver, whether from inflammation, abscess, or a number of other things. This morning an ultrasound was done of her liver and abdomen. Absolutely no abnormalities were seen. The liver team was called and are now putting into considerations other factors that may be causing it. Other then Ashtyn's liver, she is doing so good!! Your specific prayers to help her sleep are being answered!!! She's sleeping well and her restlessness is gone. Hence the reason I'm able to write this. Prayers for the day: 1. That her liver will start healing. 2. That her pain will lessen and she'll begin to feel less malaise 3. That she will remain infection free so recovery will continue. **One standing prayer that is needed Every Single Day is that the chemo will kill her cancer so that she can get into remission and be able to get a bone marrow transplant** The chemo is still in her body. Let's pray it's doing its job. Thank you for your faith in God and your faith in Ashtyn.

October 24, 2016

The last several nights have been rough dealing with restlessness and pain. Ashtyn had extreme abdominal pain. Because her total bili lab value had doubled, we figured there must be a blockage of some sort in her liver. An ultrasound was done of her liver and abdomen this morning. We are still waiting for the results. I'm not going to lie. Watching her struggle severely the last several days wore me out. Yesterday I hit a wall of exhaustion. Brad, Ashtyn's step dad, has come up every night to sit by her bed and help her with whatever she needs. That has allowed me to sleep pretty good from 2:00 - 6:00 am. Jason came to the hospital this morning and I slept restfully from 9:00-12:00 pm. I do sleep better at Ashtyn's bedside than I would at home. So I recline my comfortable chair and snuggle into my pillow with the fuzzy Brighton High School blanket that was given to her. I'm now going to go take a much needed shower, in the hospital of course, and then face the day with energy again to do what is needed for Ashtyn. Side note: I'm a nurse and worked in the NBICU for 10 years. Her dad Jason is an anesthesiologist. With Ashtyn, it's easy for me to be the mom, not the nurse. All my questions and concerns come from being a protective mom and knowing her. Jason as well has no problem being the dad, not the doctor. He has no interest in managing her medically. Today Jason got Ashtyn up to sit in a chair for the first time since being in the ICU. She said, "What happened to you being my dad and not my doctor?" His response, "Well I'm just doing what your doctors told me to do." Once Ashtyn sat up she said to him "If this goes wrong, I'm suing you." Even when she feels more miserable than any of us could comprehend, Ashtyn's still a sweetie and still funny. Currently I'm waiting for results back from the ultrasound to see what's wrong with her liver. I will update tonight on her progress of the day. Thank you for loving her.

October 24, 2016

I'm so exhausted and fried but I want to updated a little of what went on Saturday (22nd) and Sunday (23rd). I wish there was a camera in the room so you could see everything that goes on. There is so much I'd like to share. I'd love to share all the ways Ashtyn shows her determination and strength. Some of the things she has said: "I feel awful. I'm going to get better fast and then get out of here." "Thank you" every time someone does something for her. "I'm sorry" when she feels she wants to be more herself. "One breath at a time" when she's coaching herself to calm her anxieties. "I'm so tired. I can't function like this. I need morphine so I can sleep." She can't have narcotics right now so she came up with another idea. "Can I have ben/ phen?" A medication she knows helps her sleep. The answer was yes. Ashtyn's not always coherent but is becoming more and more so. Her short term memory struggles which is completely understandable. Saturday (22nd) night was the first night she asked me, "Mom, what happened to me?" I asked what her last memory was. She remembered Sunday night the 16th, the night before she went into shock and was taken to the PICU. I explain how the following morning she went to the PICU very sick, needed a breathing tube, and had worked so hard for days to get better. On Sunday 23rd she had no recollection of that conversation and asked again what had happened to her. I reminded her again. My mind is jumbled so I will simply jot somethings down that have occurred this past Saturday and Sunday: Her kidneys started to show great signs of improvement. Her central line was taken out and replaced with a picc line. Her art line was taken out. She's still on oxygen but because of restlessness is moving around more which is good for her lungs. It's been both joyful and difficult watching Ashtyn transition back to life. We are so happy watching her improve and become more herself. On the other hand, it's difficult to watch the hardships necessary as she heals and recovers. It's been exactly one week since Ashtyn almost died. I know this was a week of miracles. I don't say that lightly. Ashtyn knows hundreds of people have prayed and fasted for her. We know that Primary Children's Hospital is a phenomenal hospital with the most capable staff. We needed both their expertise and the grace of God to get Ashtyn to where she is today. She is a miracle because of you. I hope each of you feel that your prayers matter and are affecting Ashtyn's life for good.

October 23, 2016

I've been wanting to give an update all day but haven't had the time or energy. Ashtyn is extremely restless, anxious, uncomfortable, and in pain. She feels horrible and exhausted. All she wants to do is sleep but her body isn't letting her. Surprisingly this is a good thing. It means her body is recovering and she is coming back to reality. As Ashtyn gets medically better and better, she is able to feel the effects of what her body went through during shock and also the effects of the chemo that is still in her body. I will give a more detailed update hopefully by morning. But for tonight, please pray that she will sleep well. Pray that her stomach pain will go unnoticed during her sleep. Pray that her mind will calm and her body will relax allowing her to get the REM sleep she hasn't had in nine days. Have a good night everyone.

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!