It was a marathon day for me as I ran more than 4 miles in and around the hospital, back and forth between Naomi and Micayah.  The internet connection was horrible and although Micayah’s room was directly below Naomi’s, we could not connect on FaceTime.  That didn’t stop her from trying to call us repeatedly though and I had to silence my phone as we all talked and laughed about how sweet and impatient she was, rightfully so!

In the morning, Naomi had a spike in blood pressure reaching 148/100 but thankfully not getting a headache this time. She now has a patch put on to help control her blood pressure better.

The prophylactic Bactria was making her organs mad and increasing some toxicity levels. She they took her off of it and she needs to do monthly breathing treatments with pentamidine. That was rough. Rough doesn’t look as tough as it was. She threw the breathing tubes, yelled at me and the respiratory therapist, quit a million times making it take well over an hour and the RT had to postpone her next appt and send someone else to a call while she was tied up with us. I send Micayah out of the room because he was starting to pace while Naomi made all of us have blood pressure while she donned her new patch. I sympathize with her but it was so irrational and unnecessary.

I am extremely handful for being in a children’s hospital today. While I ran from floor to floor getting Micayah where he needed to be and hanging out with him in recovery, Naomi had a bit of time she would have been alone. She had a visitor stop in and do art with her and Naomi made these beautiful pieces.

A bag….

Kaleidoscope art

Naomi and I started a puzzle this morning. We worked on it quite a bit while Micayah was in surgery.

A volunteer, Maryann, sat with Naomi for hours today while I was gone with Micayah and they continued to work on the puzzle. When he came back after surgery, he helped for a few minutes, too. God Bless all these volunteers and child life specialists. I am beyond thankful for them.

As I was walking back from dinner, Naomi texted me that she was almost finished with the puzzle. So when I got back we put the last few pieces in together. It was called PAWS GONE WILD. Isn’t it hilarious?

Micayah took a few hours to totally come off meds. The pain medicine would last until about 9pm. I think the morphine for pain relief made him very jovial and almost a danger to himself. He thought he could do more than I thought he should do.

I am so proud of him. I can’t express that enough with words. He is such an amazing person. He never wavered in his resolve to be her donor. Even before we knew he was her match he hoped it would be him to protect the rest of the children from the procedure. And when there was conversation of her possibly needing a second transplant, he never let on that he was stressed about it. When we discussed it, he was always very calm and willing. He had some nerves the day before but by having extra game time and hanging out with some friends here he stayed true to the task.

He was presented with a certificate signed by Dr. Margolis. It is the first ever “Two-Time Bone Marrow Donor” certificate given at CHW! The certificate program recently started and she said that he was the first second transplant to get the certificate. It was very meaningful to him.

Naomi presented him with balloons and CHW shirts – a sweatshirt and a tshirt.

Micayah promptly got out of the wheelchair to hug her. I love that boy. He is so selfless.

Naomi had not left the room at all today. I was willing to leave Micayah in the room to rest but he wanted to practice wheeling the chair. It makes me laugh to write this because I am pretty sure the pain medicine was affecting his judgement. He was not quite himself. Some grandiose thinking and really pushing Naomi to even take the walk as she would have been content to just stay sitting all day. After our persistence with her, and Micayah’s insistence to join the walk, we formed a parade in the hallway. I pushed the machine for Naomi and she pushed Micayah. He decided to try racing in the wheelchair though. For some of the walk, he was behind me and kept bumping my ankles. Between Naomi’s tubes tangling and Micayah bumping my ankles and acting a bit loopy as the morphine wore off it felt a bit like a traveling circus. The nurses were entertained.

Naomi was very tired at the end of the day. She said her whole body felt heavy and sore. Her blood pressure was very good this evening. I’m hopeful she won’t spike tomorrow. So hopeful that I will sleep an extra hour and not get to the hospital until 8:30 instead of 7:30am. My whole body is sore too. Pushing Micayah’s wheelchair was a extra workout tonight. But then I had to also do 3 loads of laundry back at the RMH and so cleaned my room and took out my garbage. I got a box from home and unpacked all of that too. Just staying busy to ignore the Day count. While it may the title of the blog each day, we don’t dwell on it. We just try to stay busy.