One frustrating thing about Hannah's care is that we rarely had the opportunity to talk privately with her healthcare providers. Hannah was always present, listening attentively, while her doctors and nurses talked with us about her most recent scans, blood work results, treatment plans, etc. I always wondered how honest they were really being when Hannah was sitting right there with us soaking it all in.
When Hannah was taken back to have her PICC line inserted, I had a rare few minutes alone with her primary care nurse. The nurse spent part of that time reviewing the at-home care that the PICC line was going to entail, then asked if I had any questions. I did have a question ... a burning question ... but I wasn't sure I could pull myself together well enough to ask it.
You might recall that Hannah had been offered the opportunity to have a Make-a-Wish granted. Her wish was to go to the Caribbean ... specifically the Atlantis Resort in the Bahamas. But she was adamant that she didn't want to go until her treatments were complete and her hair had grown back. I mean, what teenage girl wants to go to a fancy beach resort with a bald head?
My question was whether we needed to disregard her wishes to wait and go on this trip now. I left the words "while we still can" unspoken, hoping they would be understood. What I really wanted to know, but could not speak because of the emotion strangling my vocal cords, was whether Hannah might die before we had a chance to fulfill her wish.
So I stammered out my question about whether we should expedite our trip ... and the nurse assured me there was no hurry. "Really?" I choked out ... "No, no need to hurry," was the reply.
OK ... so we would wait until Hannah was completely well to go ... or at least until her hair grew back.
We never did that Make-A-Wish trip because Hannah never did not get well enough to go, nor did her hair ever grow back. Over the years I've wondered why the nurse responded in that way, because I do believe that with the breadth of experience she had, she knew.
I have some theories ...
Maybe she didn't understand my underlying question. After all, I did not actually ask what I really wanted to know.
Maybe she knew that there was no way we could be away from hospital for any length of time due to Hannah's constant need for platelets, so she knew that making the trip at that time was not even a consideration.
Maybe she knew that it was already too late for us to make the trip.
I have no hard feelings whatsoever toward that nurse ... She took wonderful care of our whole family the entire year we were at Children's. I really believe she was trying to spare us some pain by answering that question the way she did ... allowing us the luxury of feeling, at least temporarily, that we had more time with Hannah.
My email from a decade ago ...
Just a quick update...Hannah had her PICC line inserted this morning at Children's Hospital this morning. It was a simple procedure which required only a local anesthetic (not sedation, as we had originally been told) and was even easier than getting a regular IV put in, according to Hannah. It will require some daily maintenance...we were given a box full of medical supplies, and a nurse taught us how to flush the line every day. I think Hannah will really enjoy not having to be "stuck" when we return for blood work again on Monday! After the PICC line was put in, we went for her radiation session ... only three more to go! Now we're looking forward to a relaxing treatment-free weekend at home!
"...I live by faith in the Son of God, who loved me and gave Himself for me." Galatians 2:20
God is good, all the time!
Jill and Brad
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