Rollarcoasters

We just finished up BMT Day 28. No white blood cells have been seen in Ashtyn’s labs yet. It’s not good for a body to be without neutrophils and every single day without them is risky and not ideal. She’s past the point where cells were expected to be seen so we continue hoping and praying for engraftment to happen real soon. I do think everything else is going surprisingly well despite the ongoing neutropenia. In a matter of 24 hours she went from wearing a gown to wearing normal clothes. She feels more energy and wants to do some normal things so she sits in a chair a couple times a day and gets up to the bedside commode. Her kidneys are doing better as well. Unfortunately oxygen is still needed, currently on 2 1/2 to 3 L. When in a deep sleep she continues to have episodes of shallow and absent breathing which drops her oxygen saturations and sometimes her heart rate. Until a sleep study is done tomorrow, the only thing that possibly helps is using a neck roll to hyperextend her neck and chin while sleeping. She’s a back sleeper, a habit from being in the hospital for years, but tonight I’m encouraging her to sleep on her side to see if it makes a different. I’ll let you know.

The entire Labor Day weekend, Ashtyn had two nurses taking care of her during the day because one was training. They gave her so much attention, making sure her medical, physical, and emotional needs were taken care of. The pressure on me was greatly lightened which gave me time to feel the intensity of the past 6 months. I was physically and emotionally exhausted. I slept in on Labor Day until noon. I then cried to the nurses, my parents, Marco Polo’ed a friend, and vented to my brother about the rollercoaster. There seems to often times be huge ups and downs, and quite honestly I’m tired of it. Currently it’s wondering when and if she will engrafted. There are also smaller rollercoasters like the weekend battle of limiting what she drank to help fluid balance and aspiration precautions while at the same time providing quality of life with her want for ice chips, water, and food. There are also moderate rollercoasters like the current sleeping problem when she breathes shallow enough that her oxygen saturation’s drop. It’s difficult for me to only complain because there is always calm and good too. She is physically stronger, emotionally hanging in there, viruses are being kept in control, does not have a dreadful fungal infection, is completely alert, well enough to get up to the bedside commode, can stand, not in pain, calm stomach, and continually surrounded by healthcare professionals that dedicate each day to serving her. God bless the hardworking, competent, dedicated, protective, loving, thoughtful, unselfish, and kind staff at Seattle Children’s Hospital. Please pray for 1. engraftment 2. absence of sleep apnea 3. improved lungs 4. the hospital staff that they will be blessed for all the good they do.

Family In Town

My go-to outfit in the hospital are black Pink leggings, a thick long sleeve REI shirt, thick socks, and Hawaii sandals. Reasoning: leggings are comfortable, REI shirts are warm, I love thick socks no matter what, and Hawaii sandals are easy on easy off. What works well for busy hospital days is to shower and do my hair late at night when everything is calm. Whatever I sleep in is the outfit I wear for the next day. That way when I wake up around 7:30 a.m., I’m already dressed, hairs already done, and I’m ready to tackle the day. That’s ideal when I’m alone. Yesterday I showered in the afternoon, put on jeans and actual shoes, and left the hospital for the first time since August 4th. Jason, Natalie, Brad, and Ethan are in town for Labor Day weekend. The plan for the next couple of days is to sleep at the hospital like always and then go on a daytime activity with Ethan while Jason and Natalie stay with Ashtyn. Today I left the hospital for a little over three hours. We went to Red Mill Burgers and the Ballard Locks to watch boats use the locks to go from the ocean water of the Puget Sound to Lake Union and vice versa. Ballard locks also has a fish ladder where salmon return to fresh water at the end of their life. Pretty cool. Getting out of the hospital was good but made my heart heavy for all Ashtyn misses out on. Coincidentally, about an hour after I got back to the hospital, Ash suddenly became very annoyed being in a hospital gown and, out of no where, wanted to put on a T-shirt and pajama pants pronto. That’s a pattern I’ve seen so many times. When Ashtyn’s health is even half way decent, she insists on wearing leggings or PJ pants with a t-shirt that preferably matches. When her health declines, a gown becomes easier for doctors and nurses to deal with and Ashtyn doesn’t care either way. Tonight was clear she’s feeling more herself and is now wearing clothes. No one thought we’d see quick improvements but today was a big day. She sat in a chair for over an hour, the first time she’s been out of bed in 8 days, and is now wearing clothes. Also, in past nights she had a nurses aid sitting by her bedside all night because she was too weak and dependent. She is now safe and alert to push a nurses call light when needs arise and is getting noticeably stronger. Today I want to give thanks for answered prayers. Also, hoping and praying for engraftment. She really needs white blood cells.

Ice Chips!

Uphill Battle

Today is BMT Day 26: This bone marrow transplant has been an uphill battle from the get go. When one struggle resolves, another struggle presents itself. But, I definitely have seen great blessings and progress; one of which is being able to avoid dialysis and a breathing tube. I’m very grateful all the struggles and setbacks of the month haven’t happened all at once. Pain and nausea were an issue a couple weeks ago, two very typical side effects of a BMT. It’s remarkable that once Ash was admitted to the ICU for lung and kidney issues, pain and nausea have not been a problem. She’s not taking any pain or nausea medications which is pretty unheard of for a BMT patient in her situation. Because she feels thirsty and isn’t nauseated, she really wants to drink. The problem is, her stomach doesn’t want much so if she drinks too much she’ll throw it all up without any warning. Another blessing is the resolution of delirium and insomnia. She is now completely alert and sleeps very well. However, when in a deep sleep, she’ll stop breathing periodically which causes her oxygen level to drop. An MRI and CT scan of her brain were normal so the guess is her airway obstructs a bit when sleeping, causing her to stop breathing.

Even though she’s still in the ICU, I feel we couldn’t ask for much better at this point. She still has no immune system so I don't expect there will be grand improvements until we see white blood cells in her labs. Nurses and doctors continue to stay busy keeping her stable while we wait for the new marrow to engraft. The entire purpose of a BMT is for donor cells to establish a new marrow in the bones that produce blood cells and over the next year build up a strong new immune system. The first sign that a new marrow is growing is seeing white blood cells in her blood labs. This generally happens around Day 25 give or take several days. This weekend, I wonder if everyone would be willing to fast and pray for engraftment and white blood cells, which is the next big milestone needed to get Ashtyn home. Thank you for believing.

MRI

BMT Day 25: VIDEO

Ashtyn has been in the Intensive Care Unit for one week. The ICU and Bone Marrow Transplant specialists, plus 10ish other healthcare teams, work around the clock thinking, collaborating, adjusting, writing orders, and doing all they can to manage the complexities of a body most of us take for granted. I’m healthy and never consider the precise balance my body achieves everyday and the immense importance of an immune system. While hospital staff work tirelessly to keep Ashtyn alive, I work to take care of her immediate comfort and daily living needs.

Since being admitted into the hospital for the BMT on July 31st, we’ve had at least a visitor or two almost the entire time. Jason was here from 7/31-8/4. Janet 8/4- 8/8, Ethan 8/7- 8/15, Brad 8/14- 8/17, Morgan 8/17 -8/20, my parents 8/20-8/23, and Brad 8/23-8/27. Understanding the grave concern doctors have for Ashtyn and knowing her spirits would be strengthened to have not only me at her bedside but also her dad, I called Jason and asked that he fly to Seattle as soon as possible. He arrived 9 hours later on 8/30.

I’m grateful for the brilliant minded and deeply compassionate BMT, oncology, and ICU doctors, nurse practitioners, nurses, nurses aids, pharmacists, infection disease team, nephrologists, neurologists, cardiologists, palliative care, as well as physical, occupational, speech and respiratory therapists, and more.

I’m grateful for her optimistic, hopeful, and believing Army. I love reading positive encouraging comments that show faith in Ashtyn, faith in Seattle Children’s Hospital, and faith in God. Please continue praying for 1. her kidneys to maintain health to avoid dialysis. 2. her lungs to improve and apnea to resolve avoiding a breathing tube. 3. Infections that they will all clear. 4. Engraftment!

BMT Day 24

I can’t explain 1/4 of what goes on in one day though I wish I could. Being in the hospital is never boring, almost always nonstop, and different each day. (I record all of this for Ashtyn as well because I hope she doesn’t remember most of it.) She is doing another unique, unexplainable thing. While sleeping, she’ll stop breathing for no known reason but at the same time her mental status has improved so much. She doesn't have respiratory problems when awake and is very much alert. When she’s in a deep sleep, she stops breathing for several seconds and her oxygen monitor shows her saturation’s drop. A CT scan of her brain and lungs were done, which looked fine. She is not on any sedative or respiratory suppressive drugs whatsoever. At this point no one can make sense of it. She has to wear BiPAP when sleeping which gives her breaths when it detects she needs them. Her health has become so complicated. I will write more details when I can. I don’t suspect her health will improve until her marrow makes neutrophils. Please pray she will engrafted soon and in the meantime remain stable without requiring a breathing tube and dialysis.

BiPAP respiratory support

CT Scan

That’s a lot of people just for Ashtyn

BMT Day 23

Ashtyn spends all day in bed, sometimes sleeping sometimes fully awake. Delirium is getting much better where there are clearer moments than others. She is completely calm with her current situation and at the same time unusually annoyed by me. I spend a lot of the day changing her diaper at least every 2 hours, encouraging her to do lung exercises, positioning her legs so her knees aren’t bent all day (which would make it impossible for her to straighten her legs when her body is ready to start standing), and encouraging her to put special boots on that help stretch her calves (so she won’t walk on her tippy toes when she begins to walk again). I understand why I’m irritating to her but I can’t help it. “I love your lungs (or legs) so much that I have to be annoying.” She actually doesn’t talk much and when she does it’s very short requests or short answers.

All in all there is definitely progress being seen. Her lungs are still a concern and great care is taken to not push them over the edge. She remains on oxygen. She started in the ICU five days ago needing 40% oxygen 15 liters high flow and is now down to 25% oxygen on 10 liters high flow. Aspirating liquid into her lungs is a risk we have to avoid so she’s only allowed to drink thickened water. She loves ice chips but her doctor feels the melted water could go down into her lungs without us knowing so it’s been asked that she not eat them. It’s a difficult balance for me as her advocate because I understand the grave risk of having water go into her lungs but I also want her to be comfortable and have as much quality of life as possible. I asked for speech therapy to assess her swallowing skills today. It was decided that she can swallow pills with pudding so doesn’t need an NG tube anymore. She can continue drinking thickened water, sprite, or really anything she wants. Her vigilant and caring BMT doctor is adamant about holding off on ice chips until we know she is safe to drink normal thin water. I think the option to drink whatever she wants as long as it’s thickened and can pull her NG tube out are great compromises for not letting her eat ice chips.

Recovery is projected to take awhile so Ashtyn will continue needing IV medications and fluids for weeks to come. When healthy, she is encouraged to drink 67 ounces a day to keep her kidneys happy. Currently she is receiving 200 ounces a day. Every effort is made to minimize the amount of fluid given but all the medications and infusions her body needs simply add up to more than ideal. Her heart and lungs are negatively affected by too much fluid so balancing everything and keeping organs happy will be a priority for awhile.

At this point we are happy for stability and the small improvements seen each day. We are still waiting for white blood cells to show up in her blood labs indicating the beginning of engraftment. A healthy engraftment is the entire purpose of a bone marrow transplant. The average day engraftment occurs for an umbilical cord transplant is around Day 28, give or take a week. Please pray that her new marrow will engraft ASAP.

Check out that IV pole! 12 IV pumps

Taking pills with a little bit of pudding.

Tight calves??? Not on my shift.

BMT Day 21

Yesterday and today have been relatively calm from a stability standpoint though Ashtyn continues to have a 1:1 nurse dedicated to only taking care of her and is kept busy the entire day. Reasons Ashtyn is still in the Intensive Care Unit: 1. Her lungs still have fluid and/or an infection requiring high flow oxygen. (15L 30% O2) 2. Complex fluid balance issues and trying to keep her kidneys happy is an ongoing battle. Ashtyn requires approximately 30 IV medication infusions on top of continuous IV nutrition. It’s not as simple as whatever fluids she’s given will equally be urinated out. Her body retains fluid in tissue spaces which required her to go back on a continuous diuretic Lasix to help get rid of the fluid. One downfall to Lasix is that potassium leaves the body with the urine making her potassium levels low. Abnormal potassium levels are dangerous to the heart. When continuous Lasix is given, IV continuous potassium has been needed which requires every two hour lab draws to make sure potassium is at a safe level. Fluid and electrolyte balance, IV medication administration, and kidney care is really complex to monitor and manage especially when many of the medications she needs are very hard on kidneys. She requires a total of about 45 scheduled IV plus feeding tube medications as well as insulin and blood products when needed. Emotionally she seems to be very calm, patient, and comfortable. I see baby-step improvements everyday as she is slowly becoming stronger and more alert. She is still in a diaper and wears a gown. Her muscles are way too weak and tight to even stand up. When throwing up, she gives little warning and can not be trusted to protect her airway completely without someone sitting her up, making her lean forward, holding the barf bag, and talking her through it. I suspect as we continue seeing improvements we’ll also start seeing her become more independent in the coming days. The Next Big Steps and prayers needed: 1. Continual lung and kidney improvements. 2. I hope soon she’ll be strong enough to swallow pills instead of using a feeding tube. 3. Her body is quite deconditioned. I hope she can begin gaining strength and mobility. 4. Engraftment would be amazing!!! I hope to see white blood cells in her blood soon indicating engraftment day is approaching.