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.