Thursday, December 04, 2008


Living with a medically fragile child is complicated. Not only do you have enough medical equipment in your house sufficient to supply a PICU, your very own PICU comes fully staffed with your very own nurses who show up at your very own door every day to provide care for your very own child. It’s just weird. Yet necessary. As my trach board friends who read this blog know, the subject of nurses is a highly emotional one because everyone’s experience is so different. While my experiences with nurses have been mostly positive, I’ve also had my share of scary nurses and situations. So, I share with you a glimpse into our life with nurses over the last ten years.

My first experience with a nurse in my home was when Jack was discharged from the hospital on nasal CPAP at three months of age. This was right after he had previously been discharged following surgery to divide his vascular ring - the surgery during which his phrenic nerve was damaged, thereby resulting in a paralyzed right diaphragm. At the time, the paralyzed right diaphragm hadn’t been discovered and no one knew exactly why Jack was persistently in respiratory distress. Jack was sent home with a CPAP machine to be used at night and when napping. I have no recollection of why a nurse was sent to my house or who even set it up. What I do remember is when I answered the door that first night, the person who identified herself as a nurse made me very uncomfortable.  However, I couldn’t exactly say to her “you scare me, please leave.” I nervously allowed her in my house. I engaged in small talk and asked her where she lived. She then proceeded to tell me that she lived on a pig farm in Illinois. A pig farm? Are you flipping kidding me? It didn't occur to me to ask her about her nursing experience.  I just knew that I was not comfortable with this person in my house caring for my baby.

That night, I set my alarm to get up every four hours so that I could give Jack his bottle through the night. I have no idea what she thought about me providing all of Jack’s care while she just sat there watching me. But no sooner had I escorted her out the door the next morning than I picked up the phone and called the nursing agency to tell them I did not need a nurse. Thanks, but no thanks!

Jack only lasted on nasal CPAP for about two weeks before he ended up back in the PICU in respiratory distress. Fast forward four months. Trach in place, g-button in place, ventilator the size of a small air conditioning unit and impending discharge. How am I going to take care of this kid? How am I supposed to continue to work?

Enter nursing agency number two. A few weeks before Jack’s discharge date, some woman showed up at Jack’s bedside in the PICU and introduced herself as the nurse manger for the agency that would be providing nursing care for Jack after his discharge. I was so overwhelmed with the fact that my kid had a trach and was hooked to a machine that I didn’t really pay much attention to what she had to say. I think I just stared at the woman the whole time with a shell-shocked look on my face and all I could hear was “WAAH, WAAH, WAAH” (you know, like in Charlie Brown). The next few weeks were a blur and then came the day I had to load Jack and all his (life sustaining) crap in my car and drive away from what had become my home for almost 6 months. Jack was discharged on trach collar only. No ventilator (or nurse) accompanied us in the car on the way home. We arrived to an empty house with a ventilator that I had no idea how to use sitting on a cart in our living room next to Jack’s crib.

Enter nurse number two. About an hour after we arrived home with this child we didn’t have any clue what to do with, the same nurse who introduced herself at the hospital a few weeks prior, knocked on my door. I let her in. She didn’t scare me. She took one look at Jack and knew he was having trouble breathing. I, on the other hand, was clueless. She bagged him for short time and then hooked him up to the ventilator. She also hooked him up to the pulse-ox. I, again . . . clueless. This nurse stayed until later that evening when nurse number three showed up. Nurse number three was confident, talkative and very much “in charge”. Nurse number three also happened to be the owner of the nursing agency. She was a former Cardiac PICU nurse at St. Louis Children’s Hospital who decided to open her own nursing agency. She is smart, funny and a bit manic and she and I immediately clicked. Nurse number three worked almost all my night shifts during Jack’s first month home and I used to stay up into the wee hours of the night just talking with her. She taught me so much. To this day, nurse number three and I remain good friends. During the three plus years that nursing agency number two provided nursing care for Jack, I did not experience a single incompetent nurse. I may have experienced a lazy nurse or two, but never an incompetent one. The owner of the agency only hired the best and many of her nurses worked in the hospital (NICU or PICU) in addition to working in home care. When we decided to move back to Phoenix, nurse number three hosted a going away party for us, with Jack’s nurses, therapists and even a few of Jack’s doctors showing up to wish us well. It was so difficult to leave our St. Louis nurses – especially our dear friend Peggy - who, incidentally, drove with us from St. Louis to Phoenix to help care for Jack during the road trip home.

Enter nursing agency number three. The very day we arrived in Phoenix, nurse number two came knocking at my door. Wait, nurse number two, you say? Yep. Ironically, the same nurse who had introduced herself at Jack’s PICU bedside and who was there to help us his first day home (and many other days thereafter) had moved to Phoenix a year before we moved home and she was now a nurse manger with nursing agency number three. Can you say lucky! Nurse number two hand-picked Kristi to be the nurse assigned to Jack’s case and I can never thank her enough for that gift. When Kristi first started taking care of Jack, she had only been out of nursing school for about a year and the only other patient she had cared for in the home had a trach, but no ventilator. But Kristi is smart, she was willing to learn from me and it didn’t take her long to figure out the ventilator and Jack. Kristi has been with us for over six years now and she is an amazing nurse who is not only competent but she also truly loves Jack. Although, technically nursing agency number three gave us Kristi, I attribute us getting Kristi to nurse number two, not to the agency.

Unfortunately, nursing agency number three isn’t nearly as good as nursing agency number two. Kristi generally only works four days a week and we have a different nurse one day a week. Over the last six plus years, our one day a week nurse has been a revolving door and until recently, I was never comfortable with the nurse assigned to us for that one day. We’ve had a nurse who was consistently late every morning and who didn’t do anything with Jack during the day except the minimal amount required to keep him alive. I’ve had a nurse who didn’t suction Jack once during her entire shift and I had many nurses who don’t suction Jack often enough despite the fact that I tell them he needs lots of suctioning. I’ve had a nurse who wouldn’t change out Jack’s trach even though he was clearly in distress because she didn’t want to do it without someone else helping her. Needless to say, I asked that all these nurses be taken off Jack’s case.

The one day a week nurse situation has been very stressful for me and Jack until recently. A little over a year ago, I was contacted by someone who knew me from the message board. She and her family were relocating from Minnesota to Phoenix for her husband’s job. She knew I was having trouble filling my one day a week shift and she offered to sign up with nursing agency number three so that she help out with Jack. Here is someone whose own daughter had a trach (she no longer does), who is an RN and who works at the Mayo Clinic, offering to sign on to care for Jack. Can you say lucky once again!

It’s so difficult to put your child’s very life in someone else’s hands. It’s difficult to find someone who truly appreciates how fragile your child is – from his bones to his airway. I am so fortunate to currently have two very competent nurses who care dearly for Jack come into my home day after day to provide the best of care for him. I can leave for work every morning with peace in my heart knowing that Jack will be loved, well cared for and happy at the end of the day when I return home.


Jack's nurses and therapists at our going away party
before moving home to Phoenix
(you can see how happy Jack was to be moving home)


The Marangella Family said...

Nurses? Don't even start me on the topic....You are VERY lucky Ann and it is wonderful for both you and Jack to have such luck. Takes one more stressor off the list!

julie w said...

Maybe this one keeps cows - or chickens!! lol

Rachel Marini said...

Thanks for sharing your nursing stories :) I am so glad you were blessed with your two current nurses (hope the orienting nurse works out!) and I give you tremendous praise for being Jack's night nurse AND still getting up to go to work each day- you are amazing. Take care. If we ever make a trip out to Phoenix you all are at the top of our list. I'd love to meet you!!
Love, Rachel

Melisande said...

OMG! Eric looks like Jack in that pictures!

Faith said...

If there is one part of this life that people on the "outside" don't understand it's the nursing situation. If I had a dollar for every time someone told me "how lucky" I am not to have to pay for Faith's childcare (what I wouldn't give to be able to send her to a daycare)....and if I had a dollar for every nurse that didn't work out...well then we could probably hire our own nurses, too.

It really is such a difficult thing. I am glad that you have found some keepers!!

Cute pics, btw!
Jen :)