by Ashlie Johansen, Ben’s Mom
Clinton, Utah

My 3-year-old was just getting over a cold. I really hoped this was the one thing she wouldn’t share, but despite my best efforts my 20-month-old, Ben, got a runny nose and cough. When I put him to bed on Tuesday evening he wasn’t feeling or sounding well (barky cough), but it didn’t seem any worse than his sister’s symptoms.

The next morning started out slow. I assumed the sick kids were getting much needed rest. My 3-year-old and I went into Ben’s room. I walked a little closer and began to panic INSIDE while trying to stay calm on the OUTSIDE. Ben was lying face down in an awkward twisted position. I could see him try to move, but he was just too weak. Then I saw the blood on his blanket. I scooped him out of the crib. My mind raced over what to do. All that came out was a muttered “Oh my gosh, oh my gosh, oh my gosh.” I rattled off a plan for my 3-year-old, “Okay, Ben is really sick. We’re going to change his bum, eat, and then go to the hospital, okay?”

The Emergency Room

We arrived at the Emergency Room just after 10am. I thought we’ll probably just get a breathing treatment and go home. A nurse called us back, and put a monitor on Ben. A number came up on the screen and her eyes got big. ”Bring him, NOW” she ordered as she grabbed my bag and my 3-year-old’s hand.

We entered a large room and I laid Ben on a big white gurney. A doctor came in and the nurse said, “We have a code 72″ - the doctor nodded and a whole team rushed in. (I have since learned that 72 was his blood-oxygen level, this is low and not good.) Just a few minutes later my husband joined us.

After 2 hours, Ben’s ER Doctor told us that despite their best efforts, Ben was not doing better. Our best option was Primary Children’s Medical Center. To do this we would have to sedate and intubate him. At this point we broke down. This is the scariest decision we have ever had to make. To sedate our baby into a nearly comatose state - not knowing when or even if he might come out of it was overwhelming.

Life Flight was dispatched, but because of a bad inversion, they couldn’t fly. They would have to come by ambulance. It was a long and tense wait. I watched Ben’s chest rise and fall. Nurses came in and hugged me. Finally the ambulance arrived.

The Life Flight team was so confident and cheerful – those are some absolutely amazing people. Their confidence gave me confidence and a glimpse of hope in a very hard situation. They asked if one of the parents wanted to ride in the ambulance, but I was too distraught – so my husband and I drove down together while Ben rode in the big red truck (he would have been SO excited if he would have been conscious!)

Pediatric Intensive Care Unit

We walked into the lobby at Primary Children’s, checked in and got our yellow “parent badges.” My husband forgot something in the car, so I waited in the lobby. The volunteer pianist began to play Away in a Manger. It caused me to start sobbing when I thought of the lyrics;

“…stay by my bedside ’til morning is nigh.
I love Thee, Lord Jesus, I ask thee to stay
close by me forever and love me, I pray.
Bless all the dear children in thy tender care
and take us to Heaven to live with Thee there.”

My husband came back, and hugged me. We rushed to the Pediatric Intensive Care Unit (PICU). The Life Flight team had taken Ben off the gurney and put him in a little white hospital crib. We were greeted by the friendly (and concerned) faces of Nurse Beau and Dr. Jared Henriksson. It was such a relief to be at Primary Children’s. It was a tough and scary situation, but Primary Children’s felt safe. The staff was friendly and confident. I knew the best people for my son were working at his bedside. They determined that Ben had the Parainfluenza Virus.

The Pediatric Intensive Care Unit is a very compact experience. We would tire very quickly, even though we weren’t doing much. The doctors were optimistic on Ben’s second night because he had a leak around his air tube. A leak is a GOOD thing - it means the swelling in his throat is going down and air passes along the sides of the tube when he breathes. If we got three leaks in a row we could take the tube out. That night (Dec. 15) Ben had two leaks in a row! We would do one last leak test in the morning and then get out of there fast! Right?! Wrong. The next morning Ben’s throat had swollen back up and there was no leak.

On day #3 (Dec. 16) we came optimistically into Ben’s room only to find out that he had a high fever and the virus was still attacking like crazy. Another long day of waiting.

Saturday (Dec. 17) was our nine-year wedding anniversary. We started out the day with good news. Even though Ben did not have a leak, they were thinking about extubating. There is always a chance that the tube will have to go back in. We crossed our fingers, arms and legs - literally, we looked like pretzels. At 10:50am the PICU staff got his tube out successfully.

After Ben’s extubation we figured our 3-year-old could come and visit. Primary Children’s has a program called Child Life, where a trained specialist talks to your child about what happens at the hospital and what is going on with their sibling. They gave our daughter a My Buddy patient doll. She drew a red nose on it and named it My Buddy Ben Rudolph. They stuck tubes on the doll and talked about them. They took a picture of Ben so she could see that he had tubes on his face and body so she wouldn’t be too freaked out. With the proper prep from Child Life she was just fine when she came into Ben’s room. She said he was sleeping. After a few minutes she got tired of him sleeping so much and said, “C’mon little buddy, let’s just play!”

We met a lot of other PICU parents. So many, many stories. We were going through something hard and scary, but other parents were going through things much, MUCH worse. Week old babies with respiratory viruses, holes in hearts, cancers and surgeries. There is a camaraderie that forms between PICU parents. The day we left the unit we went around to our new friends to say goodbye and wish them luck.

Recovery

Twenty-four hours after Ben’s extubation on Dec. 18, we were given the okay to be moved out of the PICU. Ben came off the sedative very slowly. He barely ate or drank or even moved. He DID NOT like the IVs in his arms - he would fight for a second, then he would just give in because he had no energy.

Monday (Dec. 19) is when we started to see glimpses of Ben again. It started with a small smile. It took all his effort and energy to smile. He really wanted to play peek-a-boo, but he just didn’t have the energy. He watched Thomas the Train on repeat all day long. By the end of the day Ben still wasn’t eating really well, but he was keeping his levels (oxygen saturation, heart rate, breathing rate) good enough that we could go home. It was glorious news when the doctor came in and said, “So, you guys ready to go home? I think it’s time.” Were we really leaving? Really? The bags went to the car, we signed the papers and we were walking out of the hospital. The whole time feeling like we had won the grand prize and were afraid of it being revoked… “Hurry up and get to the car! Before they change their minds!”

Home Again

Our 3-year-old was so surprised and happy when we walked in the door with Ben that she ran into another room, grabbed the My Buddy doll she’d received and came back into the room ripping the tubes, tape and IVs off, yelling, “he’s home! He doesn’t have the tubes anymore! Ben’s HOME!” After coming home Ben was still weak, but getting stronger every day. Nursing a toddler who was been sedated back to health is like having a rapidly progressing newborn.

A Changed Perspective

Our hospital experience from start to finish was six days - which by some standards is short, but for us it was enough time to gain a new perspective.

Wondering if your routine, your child, and your life are changed forever is scary. Being in the PICU was an eye opening experience. We were scared. Parents often live day to day in PICU not knowing what will be next. Hearing other parents tell their kids’ stories made our hearts ache. I knew that when we got home we had to give back.

We decided to start a family service project called, Ben Gives Back. We are collecting items representative of Ben’s hospital stay to give to Primary Children’s. We feel that Ben Gives Back is the service, blessings, and kindness we received coming full circle.

We are so thankful to be close to such a great facility. People come from all over the world, and we take it for granted in our own backyard. The staff is so positive and confident – they do a great job at creating a positive place of healing. Primary Children’s is never a place I thought I would be – but I was absolutely thankful that they were there when I needed them. THANK YOU PRIMARY CHILDREN’S!

Story Lines is a feature on Play Ground telling personal stories and experiences about the hospital – written by the individual. If you would like to share your experience on the blog, please contact us.