October 27, 2016

This is cray cray! Seriously! One complicated thing after another. This morning at 9:00 a.m. Ashtyn went down to "same day surgery" to get a bone marrow aspirate and biopsy. The procedure allows them to get a sample of her bone marrow to check out the cells and get an idea of how her body responded to chemo so far. As we wheeled her past families sitting in the waiting room, I saw the stares Ashtyn got and noticed even more how deeply sick she looks. On arrival I talked to the anesthesiologist, who took time yesterday to look over her charts. (She was suppose to have the procedure yesterday but we forgot to put her NPO so it was postponed to today.) He was very aware of her days in the ICU and wanted to be very cautious in what medications he gave. "I'm just going to go very slowly with her." I mentioned that a chest X-ray was done at midnight so he might want to take a look at it. Ten minutes later he returned with the news. The procedure was not urgent so he felt they should not go forward with it. He was too scared doing anesthesia on her, fearing it would send her back to the PICU. That would be devastating. "I don't want to hurt her. If I send her back to the PICU, she has no reserves to handle it." I thanked him profusely and choked up with tears of gratitude for being so thoughtful, so caring, and so cautious with my daughter. Ashtyn's oncologist Luke came down to discuss a couple other issues. Her bilirubin is climbing. Because of her kidney issues, Ashtyn's not stable enough to do an MRI or PET scan with contrast. She's also too unstable to get a liver biopsy. Everyone's doing the best they can with what we have. One thought is that she may have veno occlusive disease aka Sinusoidal obstruction syndrome which requires the drug Defibrotide to fix it. One problem with the drug is 5% of those who take it have bleeding issues. Ashtyn already has low platelets so she would regularly need platelet transfusions and monitored closely. Another problem, she needs a second double lumen central line because the med is given every four hours infusing over two hours. Luke wanted her to go to the OR today to get the second central line. On one hand, going to the OR is risky and might get her sent to the PICU. On the other hand, he doesn't want her getting worse and really wants to start that med. I was seriously sweating bullets. Should we do surgery today with the risks? Should we wait for tomorrow and hope the diuretics improve her lungs throughout the day? Or will she be worse and less stable tomorrow? All I really really knew was I did not want her going to the OR today. We discussed that the IV team placed her first PICC line in her room while in the PICU. She handled it well so that was the new plan. To get her back to her room, place a PICC line, start Defibrotide, and hope it works without any bleeding complications. Once we got back to her room, the IV team was already there to take a look at her. I was so happy to see that the woman who placed her PICC line in the PICU was there to place her second PICC line today. They took a look at her veins with an ultrasound, marked the vein, put numbing cream on her arm, and an hour later they were back to place the PICC. Her first PICC line took 20 minutes. Today the IV team was at her bedside for 1 1/2 hours and walked away without success. The catheter of the PICC line would not thread to the proper place. Here's the deal: I need every amount of prayers to petition to God that her bili levels go down immediately showing us that she does not have veno occlusive disease, does not need the medication defibrotide, and does not need that extra PICC line. I don't care what God you believe in or where you find your spiritual strength. Each and every one of us has spirituality within. Search deep and send those prayers and energy to help get her liver on the right path. By morning we need to see some indication her bilirubin is coming down. And ideally see some lung improvements as well. Please don't push this aside thinking your prayer doesn't matter or that she has enough people praying for her already. Your individual prayer does help so please join us no matter how short your prayer it might be. My heart is full of faith in your prayers and know that God is still a God of miracles. The power of prayer in numbers can bring about the miracles we want. Please share this with as many people as you can and even email it to those you think would be interested in helping but don't get on Facebook.

October 26, 2016

Lots of emotions go into one single day at the hospital. Tuesday October 25th: Morning: started with Ashtyn wanting me to get in her bed and hold her in our classic comfort position. The head of her bed inclined, me sitting on a 120 degree angel while Ashtyn sits in front of me, between my legs, and lays back against me. Her stomach hurt and wasn't feeling well at all. Ashtyn was told she needed an nasal gastric tube (a tube that goes in her nose and down into her stomach. It would then infuse formula into her stomach.) She has a history with NG tubes from her previous cancer diagnosis. Getting them inserted is a nightmare for her. Once in, the tube just makes her depressed. After getting bummed about the tube for a little while she asked, "Can I just eat the calories myself and not get the tube?" With the understanding that her energy is low and she hadn't eaten in 10 days, the determination was there to do all she could to not get that tube placed. The rest of the day she sipped on chocolate Carnation drink. She probably drank close to 1,000 milliliters. Not bad for her first day. Afternoon: Recovering is hard work. Lungs need to be strengthen: Ashtyn's suppose to do breathing exercises. Muscles need to get stronger: Physical and Occupational therapy encourages muscle strengthening exercises and flexibility movement. Nutrition is important: She's often asked to drink "one more sip" of her Carnation drink. Even the basic task of getting up to the bathroom is a chore. She noticed, "A few weeks ago I could walk upstairs. Now I can't even walk one step forward." Hygiene: She's suppose to do oral care four times a day and get a bed bath or shower every other day. There's never a shortage of tasks to do and healthcare providers coming in and out of her room. Evening: Ashtyn was moved to the cancer floor after nine days in the ICU. Even though she was very happy to leave PICU, anxiety kicked in. There is so much going on in her body and around her that she is over stimulated. Night: Ashtyn had a temperature of 102 degrees. A blood culture was drawn. There's really nothing we can do for her fever. She's already on large spectrum antibiotics. Tylenol hasn't been helping to bring it down. We ended the day like we started it. Ashtyn wanted me to get in bed with her. She's feeling anxious and awful. At 2:00 a.m. she laid in front of me, I held cool cloths on her forehead to try to decrease her temp. At 3:00 I laid beside her trying the ease her anxiety further. At 4:00 am she still couldn't sleep. It's 5:00 am: Her temperature is gone but she's still restless, anxious, and unable to sleep. They say that ICU's can really mess up ones psyche. I would say that's the case with Ashtyn. Nights are rough and we are doing all we can for her. All in all we are still three steps forward so I can't complain. God is good. Prayers of the day: 1. For her liver. 2. That her nights will improve with less anxiety and more normal sleep. 3. That her appetite and ability to eat will increase. 4. Her doctors and nurses will be inspired to know when there's a red flag that needs to be looked into. **Ongoing prayers that she will remain healthy and get into remission as soon as possible**