In December we had a PICC line put into Isabella’s left arm. Such lines are meant to be convenient to deliver medication or nutrients. People who have cancer may have PICC lines or ports. Children and women who have veins that are difficult to access have these delivery systems put in. The surgery is minor, but the upkeep can be nerve-racking. The site must stay cleaned and the line must be flushed regularly. Showering is tricky and swimming is forbidden. Though convenient for drug delivery, PICC lines are not a breeze.

Immediately after the line was inserted, I expected to have Isabella start a weekly regimen of nutrients. That did not happen because one of the key nutrients was not available. So, here she was with this line that needed to be closely monitored, but it wasn’t getting used. Two days after the procedure to insert the line, I left on business. I called home on the day that I was leaving to visit a friend in Key West for a day. Isabella had a high fever. She never got sick. A friend with a special needs child convinced me to continue with my plans and go to Key West. Isabella was in good hands at the hospital. I went to Key West. It was the coldest day of the year.

The nutrients didn’t arrive until after Christmas or New Year’s. Whenever it was, I was not able to administer the nutrients during her holiday break. I found that very frustrating. At some point, she received infusions twice weekly. Following each, I was emotionally and physically exhausted. She was fine. Over the months that the PICC line was used, we had to wait for syringes, nutrients, and IV-ready glucose water. It was like a work slow down.

I was spent. Isabella had been receiving the infusions on Sundays, so the day was pretty much shot. Each infusion took at least four hours. It required a lot of attention from me. Isabella was totally cooperative, watching movies or doing her repetitive needlepoint throughout the infusion. At one point when I thought we’d start up again, Isabella was scheduled for her 2-day EEG. I was exhausted again.

My husband and I spent an overnight on a ship. We left our children home and asked my sister, who lives around the corner, to check in. Our ship arrived back in NY on Mother’s Day. Our children took the ferry into Manhattan and we had brunch at The Standard under the High Line. It was lovely. We drove home and did nothing for the remainder of the day. In the evening I remembered that Isabella’s PICC line should be flushed. I unwrapped the bandage. Nothing was there, except a rash from the adhesive and a small red spot where the line had entered her arm.

As my husband looked through the garbage looking for the line that had been in her vein, Isabella got upset and her brother looked panicked. We found the line. It appeared whole. We went to the ER. On the way I asked Isabella why she pulled out the line. She replied, “I want to be normal.” Me too, Isabella. Me too.

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