It’s 2:25 a.m. on Tuesday morning. I am sitting on Ashtyn’s comfortable electric blue square chair with my feet resting on my couch bed with a blanket over my legs and a pillow behind my head. Ashtyn is in her hospital bed, with the head of the bed elevated, in her PJ’s, pillows positioned perfectly, reading a book. It is quiet and peaceful. We are rarely interrupted at night other than midnight vital signs and 4 a.m. medications, blood lab draws, and vital signs. Even at 4 a.m., if we are asleep, the nurses will quietly do what they need to do and use a red light to see what they need to see. That is why we love nights. That is why we stay up late.
During the day it is rare to go more than 30 minutes without someone coming into the room. Whether it is nurses, techs, pharmacists, housekeepers, resident doctors, fellows, attendings, physical therapists, child life specialists, the yoga team, social worker, psychologist, or visitors, there are often people in the room keeping us company. That is why we love the daytime. Primary Children’s Hospital is a remarkable place to be with outstanding staff. We have been truly blessed to associate with such gifted and impressive individuals.
Much of today was spent preparing for when Ashtyn goes home. I suspect she will go home before the end of the week. Her ANC was zero again today, however she is looking and feeling well. She has not had anything to eat or drink for four days. On Friday she was very hungry. After prayers were said and a blessing was given, her hunger went away. How did she go from being very hungry with a large appetite all month to being completely content without food? A Miracle. Hunger has not been a problem. To keep up with hydration and nutrition, she has had TPN running continuously into her central line. TPN (total parenteral nutrition) is feeding a person intravenously, bypassing the usual process of eating and digestion. Ashtyn receives IV nutrition that contain nutrients such as glucose, amino acids, lipids, and added vitamins and minerals. Today the doctors allowed her to drink clear liquids such as broth, slushies, and apple juice. After 24 hours, if her stomach tolerates clear liquids well without cramping, nausea, or pain of any kind, she will be allowed to eat bland foods such as rice, toast, applesauce, and mashed potatoes. Slowly she will work her way up to eating normally. Ashtyn can even have TPN at home if necessary until she is eating 1500 calories a day again.
As always, the risk of getting an infection is high. I want to be extra vigilant and do all I can to keep her healthy. If the bone marrow transplant is to take place in several weeks, it is imperative that she remains infection and inflammation free. Today I arranged for my carpet and air vents to be cleaned on Wednesday in preparation for her coming home. Our dog is scheduled to be bathed and groomed and will thereafter be bathed every week. A large supply of disinfectant wipes will be purchased.
Yesterday Ashtyn decided she didn’t want to risk getting sick by going to Disneyland. She instead resolved to go to the beach where there are less crowds. Today she decided that a beach trip wasn’t worth the risk of getting sick either. She wants to play it as safe as possible and opted to stay home during her break from the hospital. “We’ll just go to Disneyland and the beach when I am done with the bone marrow transplant.” With that in mind she stayed up until 3 a.m. Monday morning preparing a meal plan for when she gets home. She wants to cook every night for two weeks. Not only does she like to cook but she also wants to pass off a goal for “Personal Progress”. Personal Progress is a goal setting achievement program that she does with her church youth group. A few meals on her list to make include: homemade burritos with salad, tortilla soup with chip and bean dip, lasagna with salad, fettuccini alfredo with Sarah salad, enchiladas with green beans, and sloppy joes with macaroni salad.
Ashtyn also wrote down a few things she wants to do when she goes home before heading back to the hospital: Little Caesar’s pizza picnic in the park. Family Home Evening. Baking desserts night. Game night. Family BBQ. Go to Park City, Utah. Hang out at Daybreak Lake. Go to the Salt Lake Temple and do confirmations, walk around Temple Square, and go to the Lion House for lunch.
Based on flu and illnesses that were spreading around the community this past winter, Primary Children’s Hospital implemented the “no one under 14 years old is allowed at the bedside” rule. Once the community has sufficiently less cases, the hospital can lift the rule. Today was that day. From here on out, into the summer, anyone can visit Ashtyn at the bedside as long as they are not sick. Morgan (10) and Ethan (6) have never been able to visit Ashtyn in her room. Tonight Morgan came to the hospital and spent time with her sister. We talked and watched Ratatouille. After Morgan left, Ashtyn and I listened to Les Miserables while I gave her a bed bath. Ashtyn then read a book for a while. In the two months we have sat at the hospital she has not once opened up a book. Tonight she actually felt well enough physically to read and mentally well enough to focus on a book rather than everything else around her. Today was a peaceful day. Peace always comes after every storm.
“Peace is not just safety or lack of war, violence, conflict and contention. Peace comes from knowing that the Savior knows who we are, knows that we have faith in Him, love Him, and keep His commandments, even and especially amid life’s devastating trials and tragedies.” Elder Quentin L. Cook