Day +26. February 10, 2014. 32nd night in room 3113.
It looks like the uncertainty of Naomi’s discharge is just like the situation we faced with the uncertainty of her admission. The common thread of this entire transplant process has had an underlying uncertainty – the postponements (and here), the uncertainty of the driving to City of Hope not knowing if we would be admitted, even before that the uncertainty of whether or not we had a donor within the sibling pool. I realized this afternoon that I have certainly grown in patience throughout this process….. but I am ahead of myself.
The events of today have been up and down… I called to find out how she was doing and was told her ANC was 700 which was up from yesterday’s 400. I was happy for the increase.
However, when I arrived at the hospital and got a paper copy of her labs, I learned that her ANC was only 400 and her WBCs had fallen to 700. I was devastated. I realized that her discharge would likely be delayed.
The nurses said that isolation was reinstated, as yesterday, and that her discharge would likely be delayed. Her RBCs had fallen enough that she needed a blood transfusion this morning, too. We did go 11 days between transfusions this time. That was the longest she went between transfusions since early in her diagnosis.
When the doctor on the floor did rounds, she told me that discharge would be delayed until later in the week, but definitely not Tuesday. I had already accepted as much, but was disappointed and trying to figure out how to keep Lauryn and Malakye occupied in the hospital for the rest of the week. They are already stir crazy.
I went to the House to pick-up Nanny, Lauryn and Malakye. Upon returning, I learned that Naomi had been allowed out of the room! They took her to group where she made me a really cute photo frame. The Child Life Specialist had dropped off a mountain of beads for her Beads of Courage string.
When I entered the room, Naomi told me that she overheard nurses talking about her saying that she was allowed to leave tomorrow. I did not believe her and told her that she should not assume they were discussing her just because the conversation was held right outside her door.
Just then, the nurse arrived to tell me that today’s doctor doing rounds came back to look for me but could not find me….. She had talked to our doctor, Dr. Pawlowska, and our doctor said that Naomi CAN be discharged tomorrow as long as her counts do not fall tonight. (She is being supported again, as her team believes they ended some supportive meds too early. So, since those meds were restarted on Sunday night, her labs did not have time to jump for Monday’s labs, but should be seen on Tuesday’s labs.)
AGH! So, the home health agency did not deliver today because they were told that we were not leaving tomorrow, and now we need to wait and see if 1) her counts do not fall, and 2) if the home health agency can deliver to us tomorrow. When the nurses and I figured out and discussed all the IFs, ANDs, and BUTs, I just laughed. I LAUGHED! It was at that point that I realized that I have grown immensely in patience since the beginning of this process.
Tonight, I finished loading the van, Naomi said goodbye to Nanny who will fly back to PA early tomorrow morning, the children here in CA are all very excited about maybe sleeping in the same house tomorrow, and the children in NV are anxious to come join us this weekend. Aaron and I cannot wait to have all our children in one room together again!
After spending one night at the House, I have two things to say: 1) I can be very comfortable there for the remainder of Naomi’s treatment, and 2) My patience is going have to grow even more having all 8 of us in one master suite!
2 thoughts on “Day +26 – Uncertainty: It Ends As It Began”
How long will you need to stay in Pasadena at the Ronald McDonald house?
Dena, We will likely be here until she is allowed to return home to Vegas. We were told to expect that to be about 100 days after the transplant.