Naomi started off the day with a platelet transfusion.  She had a busy day again, coming and going from her room, but not quite as much outside her room than she’d been the previous few days.  Her hemoglobin is dropping again.  I can see a small bit of fatigue there for her.

It didn’t stop her from walking a lot.  I wish there was a pedometer on her machine to track how many miles she walks in the hallway each day.  We also played ball/basketball.  In typical Mom-fashion, I made her do some schoolwork today too.

It was tube and machine change day.  Naomi was able to get a bath and be disconnected from the lines for a while.  We enjoyed some time in the playroom where she felt the need to be off the ground, and on the table, and jump off of it.  I think it was the closest thing she could find to a balance beam.

Naomi has been so appreciative and cuddly.  Throughout the day she will sit on my lap, snuggle next to me on the sofa and ask me to lay with her.  I’m sure her favorite part of the day is when I give her a massage each night, but if I sense some anxiety, she always calms down as soon as wrap my arms around her and hold her.  She is usually generous with affection and with us being the only one here for each other, that is the situation all the more so.  I love those moments.

We spent a lot of the evening cuddled up watching Netflix.  I knitted her transplant blanket while we watched.  This spiral blanket was started inside and I work out attaching each row individually.  It really feels like I am “engrafting” as I knit, adding one row after another on to the previous.  The colors were chosen by Naomi.  They are symbolic of what happened on that day.  Each block of 9/10 ridges is for a day.  The latest square I knitted was for Day -1 in which Micayah had his surgery to be her donor – that is red.  The green was for chemotherapy days; blue for inpatient/admission; orange for days in which no care or treatment necessary; purple for outpatient/clinic days.  I am trying to get caught up this weekend so we can knit with the special engraftment yarn as soon as that happens.  The first square that I will knit tomorrow will be for transplant day and it is going to be double stranded and using a combination of two colors.

We learned that one of Naomi’s nurses suffered with AA.  She is the first person we’ve met who is a long-term survivor of AA.  She recovered with ATG treatment and didn’t need a transplant.  I appreciate that her and Naomi talked about how this illness, and really any, affects you as a child – either you grow up and want to help others and decide to work in medicine, or you want to get as far away as possible.  Naomi has been talking a lot about volunteering at a hospital or maybe being a child life specialist since she loves working with people so much.  I love how her thoughts go to the future and she is constantly making plans of things to do.

One of our frequent topics of discussion this week has been potassium.  Naomi’s meds are hard on her kidneys and then they do not excrete specific minerals properly.  Potassium being a big one.  So, we have to keep an eye on her potassium levels each day and if it is trending high, cut back a bit on foods that contain potassium.  The dietician brought me a sheet that gave very strict potassium diet rules.  Naomi’s food intake went down as soon as the dietician discussed it with us.  I chatted with the doctors about it because they didn’t emphasize the importance of it as much as the dietician did and I could see the limitations on what she perceived she could eat was affecting Naomi.  The doctors said that we should be aware of it, but that it is not a hard and fast rule to avoid potassium.  They warned though that it  could at some point become more strict, especially once we on outpatient status if she struggles with fluid intake.

Naomi drinks really well though.  One of the things I learned from last transplant to this one is to let her drink beverages other than water.  Water is great and she generally drinks a 32 ounce canteen each day.  But I also let her drink other things, too.  Most days she will have lemonade, iced tea, apple juice, cranberry juice and sprite.  We are obviously really pushing the fluids.  I give her juice every time she swallows meds.  She drinks sweet tea from the cafeteria at lunch time.  Variety and consistency.  It is really almost an impossible amount of fluids that she needs on a daily basis which is why she still has a bag of fluids going into her veins.  But she wants to do as much by mouth as possible and does a good job getting in a lot of fluids.

I have been using just a few drops of lemon essential oil in her lotion for her nightly massage.  I will give some credit it to it as well for helping keep her organs happier  and her metabolic panel looking good.  We still diffuse Citrus Bliss, Wild Orange and Lavender daily.  I personally use my Passion lotion, Cheer, Peace, OnGuard and Breathe daily.  The hospital has such dry air that my sinuses were drying out.  The oils help keep me from getting sick and also in a better mood.

Naomi and I cleaned up her room quite a bit this morning.  We packed up all the completed puzzles to be returned them to our room at the RMH.  I had a huge load to carry over with me later at night when I left her.  Completed puzzles, extra craft supplies and specific things that she would like to do at the house were cleared.  I remember how challenging it was to move her out when she was released previously.  We are trying to stay on top of the stuff this time.

While Naomi was taking her bath her psychologist came in to talk to us. She commented about how nice we keep Naomi’s room and how well we have it decorated to be homely.  Room care is really important to us – again, a lesson learned from the first transplant.  We keep everything organized.  The room service comes through daily and sanitizes.  They clean really well too.  I will often find an area behind the chair or under the sofa and have the furniture pulled out when they arrive so that we can keep dust and dirt to a minimal amount.  Being in the same room with not a lot of space can be as easy or as hard as we let it be.  Naomi and I have done well in that regard.  I also make it point nightly to clean up her room as part of bedtime  I sanitize her tray, put all craft supplies away.  Laundry when removed gets immediately placed into a bag hanging outside her room.  She received a scrapbook and has been adding cards to it as they arrive.  She loves to flip through it daily and recall all the cards she has received.

Finding creative ways to get through each day has been easy with Naomi because she has so many interests.  It has been a few days since she has used the “bored” word and for that I am grateful.  As soon as she says that word, I feel the tension and anxiety rise.  Usually an emotional meltdown soon follows the use of the word “bored.”  So staying busy has prevented both the use of that word and emotional breakdown.

On her dry erase board each day, we are counting up from transplant – BMT +10 or whatever. We are also counting down to Aaron arriving with Sinéad and Caitríona.  Naomi is so excited to see them.  I will warn you that my  blogging with significantly reduced the days they visit!

Friday night was Culver’s delivery day.  Naomi and I enjoyed Peanut butter chocolate frozen custard. We still have half to finish in the freezer.  Wisconsin has been very good to us.  From the staff at RMH to volunteers who bring in meals for us and other patients we’ve met, everyone has been so welcoming and making sure we feel comfortable.  The support system in place at the MACC fund center is amazing.  There is a Facebook group for those of us with children there currently or in the past.  Any question can be asked or answered.  It is also how we parents communicate with other about events.  We have seen and experienced a positive side of humanity and our lives are better for it.

When I think back to our week in St. Rose last month, it was lonely.  We sat in Naomi’s room in complete isolation in our own hometown.  She was bored out of her mind.  Life is different here.  There are people who make it their mission to serve the hospitalized.  Not only does Naomi survive here, but I feel as though Naomi is certainly thriving.  Bring her to CHW/Milwaukee Regional Medical Center was the best decision we’ve made with regards to her care.