Day +14

It was perhaps our most difficult day in terms of psychological and emotional issues.  Naomi was just not herself.  She was alternating between sad and angry, and was quite restless.  When I called from the hotel for her AM report, I was told that she has been crying, yelling at nurses and very agitated around 5:30am. I pointed out that there is often a round of vitals, including waking her to stand on the scale, around that time.  When I arrived at the hospital about an hour later, the day nurse confirmed that her vitals and weight had been charted at 5:11am and her agitation/restlessness at 5:30am.  I pointed out the obvious correlation.  Within an hour, as per my request, the doctor ordered that Naomi no longer be woken before 8am to have vitals and weight done.

Having rushed in here this morning because the nurses made it seem like she was spontaneously yelling and crying in her sleep, I arrived just as she was waking.  It was a great day for time together since Caitriona took a marathon nap for Nanny today which allowed me to stay with Naomi most of the day.  This evening I am staying with her, too, because the same nurse as last night is here and I want to see what happens and if Naomi wakes again like she did last night.

I had a good conversation with Naomi’s dr today and am really looking forward to the weekend and early next week.  It should not be too much longer before we start to see some real progress.  Although today was a bit disappointing for us as we were geared up to start seeing an increase in numbers, we were encouraged.  I was told that after Day +100, Naomi is encouraged to try to return to a life as normal as before she was diagnosed – including church, gymnastics and all.  That is very exciting.  In my mind, I had her in seclusion for months to come, even upon returning home.  But it looks like life will be able to return to “normal” sooner than I imagined.  I realize that we are all very changed and normal will look different for us, but it is exciting to think that she can feel normal again sooner rather than later.

So, that is what we have to look forward to in the near future.  But for now, we push through the chemo effects, the emotional transitions involved with a transplant, and of course this unending isolation for Naomi.  I can close my eyes and see her walking in the gardens here; feeding the fish at the pond; swinging at the park.  It will be like her firsts all over again… only she will remember all these experiences.

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