26 January 2016

Oliver and a nurse who made a difference

Each day since Bennett was admitted, Brian and I have made sure that Oliver and Avonlea travel the 30 miles south to visit their brother in the hospital.  We know it lifts their spirits (and ours) to be together as a family and know each other is doing well.
Avonlea knows no other world than one with Bennett suffering from CF.  However, Oliver has been there since before the beginning of our CF journey.  Oliver was Avonlea's age (2 years old) when Bennett was born.  So Oliver has essentially been along the ride for every one of the 7 surgeries and multiple hospitalizations Bennett has endured.

Because of this, we are especially attentive to Oliver's emotional needs, knowing that he is helpless in his watching his little brother undergo painful and challenging experiences.  Like Bennett, Oliver is in play therapy so that he can work through the myriad of feelings that comes with having a brother with an incurable chronic disease.  Oliver has known since preschool that Cystic Fibrosis is fatal.

Brian and I are acutely aware Oliver absorbs a lot in regard to Bennett's health.  We know Oliver often worries more and carries more than we wish he would.  There are moments when this especially peeks through.

An example of this was this weekend at the hospital.  At the time, Bennett was still regularly being hooked up to supplemental oxygen due to low oxygen saturation in his blood.  Bennett's blood oxygen rate and heart rate was reguarly being monitored through a pulse oximeter machine on the wall.  At times when Bennett's rates were high enough, he could take off his mask.  But if they dropped, we were asked to help him get more oxygen by wearing his mask.  

I hadn't thought much about the situation until Oliver came to visit that evening.  Every time Bennett's monitor would alarm, Oliver would chastise me for not paying attention to Bennett.  The first few times, I would calmly explain that Bennett was ok and Oliver should not worry.  But after a while, I began to notice true panic and fear in Oliver's eyes. 

I eventually asked enough questions to be able to understand Oliver's fear was that ignoring the alarms would mean Bennett was going to die. Oliver hardly stand the blinking lights and alarms. He told me, "I get scared when Bennett begins to cry."

I knew I needed to slow down and really help address Oliver's fears.

I would have called Child Life Specialists to help Oliver cope with everything he was seeing.  But they do not work at the hospital on the weekend.  

Instead, I turned to our nurse, a really sweet woman who has taken the very best care of us several times during our stay. 

I explained to our nurse, Allison, that Oliver has been very concerned about Bennett's health and might do well to learn more about how the machines Bennett was connected to help him stay well. 

Allison was a natural.  She turned to Oliver and in a very grown up but understandable way and explained to him how the oximeter worked (see the small machine on the right-hand corner of picture).  

Allison put both of her hands on Oliver's shoulder and said, "Oliver, the first and most important thing you need to know when working this machine always must start by looking at the patient."  

She gently turned Oliver's head towards Bennett.  She said, "you always start with the patient.  If they look good, that gives you important information." This was really great for Allison to say to Oliver because, despite that Bennett was awake, moving and talking, Oliver wasn't convinced he wasn't in dire need.

Allison she continued by telling Oliver about how the machine is hooked to a very small monitor with a light on the tip of Bennett's finger.  She explained that this tiny finger monitor can often get moved causing interference and therefore a poor read.  Then, she explained what each of the lights and sounds meant.

I didn't hear all the words she spoke.  I was too busy watching Oliver's face.  I could literally see his anxiety melt away, his shoulders begin to fall and a slight smile take over his grimace.

"...But remember, the very most important thing you need to know about working this machine is..." Allison started.
" always look at the patient," Oliver replied. Then Oliver sighed. "Oh ok.  I was just worried." 

This moment between Oliver and Allison was one of those moments you take a picture of in your head and you know something really important happened.  

A shift happened for me in that moment as I recognized the power of knowledge.  The more Oliver knows about the machines, the treatments, the medicines that Bennett is undergoing, the more likely he is to feel peaceful about Bennett's care.  

I also think something shifted in Oliver in that moment.  Allison had just calmed my son in a very important way - a way that will be lasting.  Oliver now understands that while machines are important, it is interpreting them correctly that is most vital - and sometimes it's not the machines that we use to tell us how things are going, it is our eyes.

Going forward, I am going to always request that we have someone (a nurse or child life specialist) walk around the room with Oliver and explain things to him.  I think it will help significantly.  

Oliver knows he should be worried.  He just doesn't know exactly what he should worry about.  I think this will help calm his heart.

I wanted to mention a few other things about what Allison did for our family while we are here.   

Allison always gave Bennett his meds on time and she fought consistently with the medical staff for Bennett to have relief when Bennett was going through the morphine withdrawal and intense reaction. 

Allison also heard me on the first day of our stay talk about how concerned I was that certain hospital staff were not abiding by the infection control protocol, even as signs were approrpiately posted and we were placed in the infection control room.  

Allison heard my concerns, reported it to her supervisor and then took it to the nurses' safety huddle.  Then, before Allison left from her shift, she created a sign and put in on the door. 

We literally have had not even one issue ever since.  Doctors to Housekeeping to Dining staff have all abided by her new sign.  I am incredibly grateful for her leadership in this area and her efforts to keep Bennett safe.  I love that I didn't have to make this sign - Allison advocated for us before I even had the time to think to do it.  That's an excellent nurse. How grateful we are to have had her as our nurse three separate times during our stay.

One other thing Allison did to make our experience easier was to design this little contraption on our bed.  She placed a tongue depressor wrapped in tape on Bennett's bed to keep all of the cords from getting tangled.  I cannot even express how ingenious and helpful this was for us, especially Bennett.

Unable to break out of the hospital to grab a little thank you gift for the way Allison went above and beyond for us, this weekend, my sister helped us grab a cookie tray at McAllister's when she picked dinner for us one night while Allison was working.  We have it to her to share our gratitude to Allison for the way she went above and beyond to care for Bennett. (Oliver, also wanting to give Allison something of intramural but also having little to give, gave her his chips from his dinner. Allison took it graciously which made Oliver proud.)

Although this hospitalization has been a painful one, Allison's initiative and tender care for my children made a difficult situation just a tad bit less painful. 

A little less worry for Oliver. A little less concern for mom. A little easier time with cords for Bennett. Nurses have the ability to change lives sometimes in big ways and sometimes in little ones. We are thankful Allison is one who helped change ours.


  1. You are a beautiful family.

    All best wishes for Bennett's health.

    God bless Nurse Allison!!!

  2. May you feel God's presence with your family!


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