Busy Day

It was a roller coaster of a day. We woke thinking we (kids and I) would be home all day. I had intentions of cleaning and folding laundry and making meals and playing with the littles; rocking Caity and tickling Niamh. In the evening, Micayah and I were to head to CA for an appt on Friday for donor testing; Aaron and Naomi would be headed to the dr’s office and St. Rose for transfusions.

After a great morning, I received an email from CA that there were labs missing, again. I had nightmare flashbacks of the Fanconi’s Anemia test results being unreadable last month and the transplant postponed because of that….

A call to COH left my day turned upside-down. Transfusions were moved from Friday to Thursday so that Naomi could accompany Micayah and I to COH on Friday. The plan was not too bad, except that the soonest we could get into Children’s Specialty for a CBC to get transfusion orders was 2:30pm. That meant, we did not arrive at the hospital to begin transfusion protocol until after 4:30pm. I also had to take Niamh and Cait without naps along with me since Aaron was working. I was “that” mother being stared at while my exhausted children nearly climbed the Christmas Tree in the hospital lobby. Niamh thought it was fascinating how her voice echoed in the circle-shaped lobby with a balcony above where the OR waiting room was. I am not sure if her singing and dancing was viewed as acceptable or not by those looking down from above. Niamh certainly did not mind the attention.

Back to the reason we were there…. Naomi’s blood and platelets did not arrive until 9pm. All this means that it will be about 1am Friday before we are on the road to CA.

I had reservations for the night at a hotel near COH and they will not refund me either. So, I hope to pull in there by 5am and sleep until about 10-11am and then check out before heading to COH for the day.

St. Rose has been fantastic at keeping things moving tonight. When platelets are almost done, we will have the blood transported to her room to begin infusing ASAP. I think our discharge paperwork is all but signed as everyone on staff tonight is focused on getting me on the road ASAP. I am
thankful for the nurses here who have come to support, love and take care of Naomi.

I pray for an uneventful trip and lots of good music on my iPod for me to sing along to while driving. I look forward to these last tests tomorrow all coming back with stellar results and having a calm few days at home before Naomi’s admission for chemo. Her cure is close! The days of transfusions are coming to an end. Keeping our eyes ahead, we keep putting one foot in front of the other.

2 thoughts on “Busy Day

  1. Kristy – I know it is not funny when you are “that mother” but your post had me in stitches. I hope you had a good drive to COH and all went well.
    Naomi – You are nearing the end of this ordeal. Keep smiling like you are in the picture. You light up the room with that smile. We continue to pray for you and know all be back to normal soon.

    • I know I replied to this… or maybe that was just something I thought I did and mentally checked it off my list? 🙂 I am definitely looking forward to less hospital visits and the need for transfusions to disappear. As far as my raging toddlers, I am learning that laughing is better than crying.

      Dear Sue,
      Thank you for your prayers. It will be done soon!
      Love, Naomi

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