It was a freezing morning here in Milwaukee.  I dreaded the walk across the Skywalk to the hospital.  But I made it across pretty quickly because as I was packing up to leave RMH today, texts started coming from Naomi that she was given a new armband for being a “fall risk” and she didn’t know why.  I could tell by the speed with which the texts were arriving that she was worked up.  Before I went into her room, I inquired of the situation at the nurses station and they assured me that it is just hospital policy that after a person is admitted for a certain amount of days it is assumed that they are weak and more of a risk.  In Naomi’s case it really only meant following hospital policy and wearing the armband.  I knew that her concern was limitations being placed upon her.   In the past when she wore a “fall risk” bracelet she was unable to even leave the bed without pressing the nurse’s call button and she was afraid of that happening again.

When I walked in, I found her with tears streaming down her face. She said, “I think I’m gonna hold a meeting with all the doctors and discuss this situation.”

I said, “there is always rounds.  You want to go out for rounds with me?”

She said, “I just might!  This is an urgent matter!”

But before rounds, I had it fixed and she was satisfied.  It was uncomfortable for her to be wearing two armbands on each arm.  So I took care of that by taking medical tape and taping them to each other, one in top of the other.  This way she only feels one armband on each wrist.  She was so much better after that and didn’t have the urgent need of “discussing it with the doctors.”

Rounding was fairly uneventful. Her vitals are under control and within normal range. Her heart rate is 75-80 which is fantastic because while waiting to come to transplant she was almost always over 100. We just continue to wait for engraftment. She is just about at baseline for meds now. What she is on now is pretty much what she will be released on.

We spent some time in the playroom.

We also decorated the windows to her door. I got some photos of outside her room for a tour for you.  CHW has a double door system.  These are her two doors.

We decorated them using both the inside and outside of the window for layering effects.

One you go through the first door, there is a sink to the left to scrub before entering her room.  The protocol is to scrub and sanitize hands before entry.

This is the interior door.  Those blinds are between two panes of glass.  They don’t get dusty! And don’t miss that lovely fall risk sign!  We joked about drawing “NOT A FALL RISK” or “not REALLY a fall risk” on the window with paint.

Today was tube and machine change day.  During her free time she got a bath and the accompanying massage from me, we walked (okay, ran) the halls and we played kickball with the beach ball on the bridge.

 

When she was hooked back up to the machine we noticed quite a few less lines coming off of the machine. That was exciting for her. It means progress to not have so much being pumped into her.
Most of the day was a lazy day. We mostly just lazied around and watched Netflix. We felt fine, but were a bit fatigued.  It felt like a Saturday in every sense of the word.  The halls are quieter.  There is less staff on the floor of the HOT (hematology, oncology, transplant) unit, less traffic in and out of the room as many specialists are out for the weekend.  It was a really nice and quiet day.

Naomi worked on her scrapbook and I knitted while we watched The Great British Bake Off.  I had to run to the cafeteria for food because watching the show made us hungry.  We had to settle for the tiramisu there, but it was nothing compared to the eclairs and tiered sponge layer cakes we were seeing on the screen.

The boys kicked off St. Patrick’s Day week with a parade and 2 performances today.  Aaron wins “Dad of the Decade” for managing a hectic work week, getting kids to practices and performances and tackling potty training Sinéad.  Really?  Totally amazing dad.

 

 

 

On one hand, I can’t believe we’ve been here 20 days. On the other hand, I can’t believe chemo and transplant are finished. It is really crazy how time moves. I can’t help but try to do the math to figure out a percentage for the amount of time we’ve completed here.