Kinsley’s Story

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I was home alone with a newborn, doing the best I could to help her through each (coughing) spell.
Kinsley_withmomcloseupkissWe were excited to have our first child. Kinsley was perfect, weighing 8 pounds 6 ounces. She had  big blue eyes and a head full of dark hair. We were ecstatic just like any new parents would be and were so happy to have a healthy baby girl. My husband, Chris, works offshore on an oil rig and when Kinsley was 4 weeks old he had to leave to go back to work where he works 21 day shifts.
 
It started with a little cough

Kinsley-backhome-grumpy

At about three-and-a-half weeks old, Kinsley got sick. She had a slight runny nose and a little cough, I could tell she was having trouble breathing when she would lie down. I’m a nurse myself and I felt I had more than a mother’s intuition about my newborn. I called the pediatrician’s office and described her symptoms. The nurse there told me not to worry and it just sounded like a cold. I followed all her instructions, using a humidifier, steamy showers holding her, etc. But, the coughing continued. She started having coughing “spells” where she struggled to breathe and would turn blue.

Within about a week, I took Kinsley to see another local pediatrician who had clinic hours on a Saturday. He examined her. He even saw one of her spells and witnessed her turning blue! I asked if it could be whooping cough (also known as pertussis). The doctor replied that “whooping cough is not very common in our area.” He basically dismissed the idea and sent us home. He told me to continue everything at home as I had been and because she was so young and could not take any medicine, it would just take longer to rid this “common cold.” I left there feeling defeated and so helpless. I knew something wasn’t right but I felt like I should just try what the doctor recommended and that maybe I was just over reacting. The next three days were terrifying. I struggled with the decision of what I should do next because I was just getting turned away every time I tried. I was home alone with a newborn and doing the best I could to help her through each spell.

The cough escalates. We go to the ER

Tuesday Dec. 4, 2012, I had a Christmas party for my job. My sister, Lacy, had offered to keep Kinsley while I went. When I arrived to pick her up, I could see the panic in Lacy’s and her husband’s faces. They told me Kinsley’s coughing had become really bad and was happening more frequently. I told them what the doctor had told me and that I was going to give her just a few more days. My friend, Hailey, was staying at our house that night and after we arrived back home and she saw how bad it was, we decided to take her to the ER.

The “spells” had become so frequent and so bad we couldn’t even put Kinsley in her car seat. Hailey sat in the back holding her while I drove. I was scared to death of being turned away and I was fearful of what might be wrong with my baby. She had been sick for two weeks. By this time, my baby looked really sick and it was obvious she was having difficulty breathing.

Kinsley_hospitalwithmomThey took us straight back when we arrived to the ER and tested her oxygen level and found it was really low. It was 75 without having a spell and just resting. She had a really bad coughing spell and vomited in the main ER room.  Her oxygen stats then dropped down in the 20s. They administered oxygen right away and started breathing treatments as  soon as we were in a room. They also diagnosed some pneumonia in one lung and did a culture swab for pertussis to send to the lab. They called my pediatrician and when he arrived he asked why we had not been in to see him. He apologized profusely when he learned we had been trying and were told there was no need for an appointment. (He is the greatest and even after we were turned away repeatedly, I still thank him for saving my baby.) Just being a new mom on my own was hard enough, but I knew I was also literally fighting for Kinsley’s life.  My husband couldn’t leave work and get home to us at the time.

Kinsley_hospital_oxygenbetterLife at the hospital

Kinsley stayed in the hospital around 9 days. They treated her with IV antibiotics, oxygen, breathing treatments every 2 hours, suctioning, and a mist tent. I stayed right by her side except when Lacy would come to give me a break to shower, grab some food, or just sit outside and get some fresh air.

When they discharged Kinsley, it wasn’t over. I still had to continue her breathing treatments and suctioning the mucous she continued to cough up when we were back at home. It is a terrible feeling seeing your small baby struggling so bad.


Relapse and Children’s Hospital

Kinsley_suctioning athome-betterWithin three weeks, Kinsley got worse again. Along with coughing spells, she developed a snotty nose and I could tell she was having difficulty breathing again. My husband had left the night before for another long shift at work. I was so scared we were looking at another hospital stay and I felt terrible for my baby. I felt so helpless because there was nothing else I could do at home to keep her comfortable.

I called our pediatrician and we went straight to the clinic. Her pertussis lab test had still not come back, but she did test positive for something called RSV (respiratory syncytial virus) and he sent us straight to the hospital where x-rays showed the pneumonia was back. She had horrible vomiting when she coughed and was having trouble keeping any milk down.

Kinsley_snuggletoyThey then transferred us by ambulance to Batson’s Children Hospital in Jackson. I called my husband  and he was coming in from work on the next helicopter to fly out. This was the longest ride of my life and I was truly terrified of what was going to happen to my baby. Now, RSV is not considered a life threatening condition, so they put Kinsley in a regular hospital room and had nurses check-in every few hours. I was frantic because I could see my baby girl getting weaker and weaker fighting this terrible infection-whatever it was.

My husband arrived and we were both so angry because we felt like they could be doing so much more for our little baby. That night she coded, that is where she stopped breathing. Well, suddenly there were about 50 nurses and technicians crowded around her. Now it wasn’t just me complaining. They now knew there was something else wrong as well. Immediately, they increased her oxygen and put her on hourly breathing treatments.Kinsley_daddy Now they moved Kinsley to a special “step down” ICU room. These rooms have monitors outside the room where the nurses at the nurses’ station can always watch patients’ vital signs and we could stay
close by in the room with our baby. My husband and I slept side by side in a chair, next to her bed, where we just waited to jump up and help her out during a coughing spell, when needed.

Her lab test finally came back positive. She did indeed have whooping cough, just like I had expected. We spent about 9 days at the children’s hospital until the staff was sure Kinsley was well enough to go home.

Road to recovery

Kinsley_home-breathingtreatmentKinsley survived her horrible ordeal with whooping cough. But it wasn’t something that just got better as soon as we left the hospital. I had to keep giving her breathing treatments for a year and a half because of how badly it had affected her lungs. And even just a cold would cause the horrible cough to come back. We spent the next 6 months in and out of the doctor’s offices. She had numerous tests to check for any long term effects and damage, luckily there were none. The spells lasted daily for about 6 months. Some days they would last all day and other times she might only have one or two. Still, we feel blessed because we know we’re one of the lucky ones. Our daughter lived.

KinsleyFamilyBrighterOur family’s message

We have no idea how Kinsley got sick. She was still too young to be vaccinated. I had been vaccinated about a year before I got pregnant. Being a nurse, I had studied and heard of all these horrible diseases and infections but just like everyone else, I thought it could never happen to my family.

Kinsley_andbabysistercroppedWe now have a second child and we were way more cautious with who was around her before she was vaccinated. Kinsley is now a healthy and happy 2 year old. By looking at her today, you couldn’t tell had ever been so sick. Even so, now when she gets a cold of any kind, it’s way harder for her to get rid of it. And, she always gets a horrible cough followed by bouts of wheezing due to the asthma this has caused. After seeing how this horrifying disease can come out of nowhere and threaten a baby’s life, we know how vulnerable life can be.

We are sharing our family’s story to raise awareness about whooping cough and how important it is to do everything possible to prevent it. You don’t vaccinate just to possibly save your baby and your family’s
lives but to also save others who haven’t been vaccinated yet or may not be able to. The benefits of vaccines so greatly outweigh the downfalls. We are so thankful our baby was able to overcome this and spared by this horrible infection, especially knowing there are so many who do not. Our prayer is that somehow Kinsley’s story will make a difference in someone’s life or give hope to a family that may be having to face this now.

Kacy, Kinsley’s mom

 

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Leslie Greenwood, RN, PHN
Alameda County Public Health Department, Oakland, CA