Sunday, December 30, 2012


When we were in St. Louis in October, one of the people I wanted to see but didn't have the time to see was one of Jack's former nurses, Holly.  Holly was Jack's primary nurse the first year and a half following his discharge from the PICU.  She was young, but had a lot of vent experience.  She certainly knew more about kids/trachs/vents than I did.  Holly took very good care of Jack, despite having to deal with a crazy mother whose only focus was getting my kid off the vent and nothing - and I mean nothing, was going to stand in my way.  (Okay, so I was a little delusional back then.)  There were many times that Holly felt a trip to the emergency room - or at least a call to a doctor, might be in order.  But I was adamant that Jack would be fine and the last thing I wanted was to see a doctor or go near a hospital if there was any risk of an admission.  Holly handled my personality well.  Eventually, she had kids of her own and left nursing all together.  

Over the years, we've kept in touch with Holly and her family.  They come out to Phoenix every couple of years because her husband likes to golf here and at one time, they had family living here.  It's been nice to maintain a friendship with someone who played such an important part in Jack's life.  Holly cared for Jack at a time when he was very fragile.  

When we got back from St. Louis this year, I sent Holly an email and let her know all that has been going on with Jack.  After getting the update on Jack, Holly emailed me to let me know that she and her family had just planned a trip to Phoenix after Christmas because she wanted to see Jack. We were able to visit with Holly and her family this weekend.  It was good for us to see Holly and it was good for Holly to see Jack.  We have been very fortunate to have some of the best nurses care for Jack over the last fourteen years and most of them have become good friends.  

Without a doubt, we've breached the professional boundaries with almost all of Jack's nurses.  How can we not?  These people come into my home day in and day out and they are responsible for keeping my child alive.  Having other people in your home all the time is not easy.  There are days I wish I didn't need nurses.  But I do. I need the help and Jack needs the care.  In fact, these days, I need a lot more help that I am getting.  I've practically begged our nursing agency for more coverage, but they can't seem to provide it.  

I can't imagine having traveled the last 14 years without the help, knowledge and love of the nurses who've cared for Jack.  They allow us to carry on as "normal" a life as is possible under the circumstances and I am thankful every day for them.  

Four years ago, I wrote a more detailed (and more entertaining) blog post about nursing - from my first experience with nursing to how we got to where we are today with our current nurses.  Read it here: NURSES


Holly and Jack circa 1999

Holly and Jack circa 2008

Holly and Jack 2012


Eric said...

Ann, please tell Holly to stop aging in reverse and also direct her to Israel (for Segev of course!). Very jealous of the great people you were able to connect to: friendship is so important in an intimate situation of home care for our children.
Sorry to hear that it's not enough though.

Christy said...

I love awesome nurses. They make our world go round. And we've breached the professional boundaries, too. They become part of the family and with good nurses, you just can't help it.

I hope you had a Merry Christmas and I hope you were able to relax a little. Happy New Year to you and yours - and I am REALLY hoping that 2013 will be MUCH better than 2012!!!

Christy xo

Ann said...

Eric, how I wish I could send Holly your way. Of course, I feel foolish complaining about needing more nursing when I think of you and the lack of help you receive. I'm grateful to have "met" you and Segev this year and my heart is with you both as you navigate the challenges you are sure to face in the coming New Year.