So the Schone summer is coming to a close- and honestly, I am ready for this summer to be over. I loved having everyone home- but we had a sorta rough run, healthwise. I hesitated sharing all of this information, but if I can keep one person from experiencing our living nightmare, I would gladly share our story! So this is a long post, maybe save it for when you can't sleep ;)
It started with Bensten. He caught “a cold”. The cold didn’t get worse initially, but it also did not get better. I took him to the pediatrician several times, not due to the severity of the symptoms, more so the lingering nature. (It was not our regular pediatrician which will be important later in the story!) His lungs were clear, they prescribed a steroid to help him over the hump.
Summer break was in full swing and Bensten was still going to cross country practice and trying to participate in swim meets. He even got a PR in a 5K race. Then one day he was playing in the pool and I watched as he had the most terrifying coughing episode I have ever witnessed. I first screamed for Izzy (I do love that she is a nurse!!) and then dialed the pediatrician from the pool deck and asked for the next available appointment. Our pediatrician was not available until the following evening, so I asked for a script for a chest x-ray in the meantime. (One of his lungs had collapsed when he was in the coma, so in true Heather style, I was catastrophizing….)
Some history before we get to the diagnosis…..
Lance had one sibling, a sister named Mandy. She was born healthy, but after her 6 month vaccines, she started having uncontrollable seizures. Back then (1975) the Pertussis vaccine was not yet a-cellular, and there were cases of “severe adverse reactions”. Mandy was deemed to have had a severe adverse reaction to the Pertussis vaccine which caused irreparable brain damage. Essentially, she lived to be 23 years old, but never developed mental capabilities past 6 months. And she suffered incredibly severe seizures, sometimes grand mal.
Lance and I were married in 1999, and I was ready to start a family right away. He wanted to wait a few years as he had played a very big role in taking care of his sister (who passed away just six weeks before our wedding). That gave us time to research the current DPT vaccine and whether Mandy’s adverse reaction was genetic and something our future children could possibly experience from the vaccine.
We met with a lot of specialists. Neurologists. Pediatricians. There was no real consensus, but when we met with the amazing pediatrician we are still with, she broke it down pretty simplistically. Pertussis (Whooping Cough) is very serious, but also treatable. It’s incredibly dangerous for babies, but if we monitored our kids’ coughs, and got them medical care immediately, she thought not vaccinating for Pertussis was our safest bet.
I think you all know that I am neurotic. And a germaphobe. Our kids are vaccinated for everything except Pertussis, but not being vaccinated for just one illness made me extra crazy. Their childhood involved a lot of unnecessary trips to the pediatrician’s office. (But hey, she became a good friend of mine, so that’s the upside!) As our kids got older, I got a little more relaxed. But if there were ever a case of whooping cough reported in their school, we opted to treat our kids prophylactically with a course of antibiotics. The fear still loomed, but I think I started to let my guard down.
I was very anxious to finally have the appointment with our regular doctor, about 3 weeks since Bensten’s symptoms first appeared.. She has been taking care of each of my kids since they were born and she is brilliant! I brought Izzy along as well….. to help explain the symptoms we were seeing. Bensten’s cough was not often, so he might not cough at the appointment. But when he did cough, it was REALLY intense. Izzy used words like “air hunger” and “air trapping”.
Within two minutes of walking into the exam room, our doctor and friend looked at me and said,
“Heather, could it be Pertussis?”
I literally gasped.
Freaking WHOOPING COUGH. Are you kidding me?
I had been scared of whooping cough for 22 years- and now it might have infected my son and I didn’t even realize it?!?!!??! I wish I could find words to explain how I felt in that moment. I was scared. I was embarrassed. I was wondering who we could have infected in the weeks since his cough began……
They did a nasal swab but results take at least 72 hours, weekends excluded! So they started him on antibiotics and steroids which is really only helpful if whooping cough is caught in the first couple of weeks. He was so far past that! But the only nice thing about whooping cough is that after 5 days of antibiotic, he would no longer be contagious.
HE HAD BEEN CONTAGIOUS!!!!!!! This germaphobes worst nightmare- being the germ spreader!!! (The pediatrician reminded me that thankfully almost all kids are vaccinated! But stillllll)
Meanwhile, Lance and Boeden had just developed a little cough. So despite not having confirmed results, they started on antibiotics and steroids.
Izzy, Liliana and I did not have any symptoms, so we joked that Pertussis only took down the males in our house! But that was the extent of jokes regarding Pertussis…..things got soo sooo sooo bad. And scary.
Lance and Boeden got SO SICK.
Like SO SO SOOOOO SICK. The coughing episodes were so scary.
Gasping for air.
Coughing so hard Boeden would turn blue and vomit.
Lance coughed so hard he broke a rib.
Boeden was relatively stable during the day. But at night, he would have about 4 massive episodes. His sweet eyes just looking at me, begging for me to help him. And I could do nothing but hug him and tell him to breathe. And after every episode, he would apologize! I begged him to stop saying sorry. I think he was just so grateful to have his breath restored. (After several weeks, we were thinking clearly enough to get a video of one of his episodes. It is very hard to watch, so I won’t share, but it could very well become a PSA for getting vaccinated for Pertussis!)
How did Bensten have Pertussis and I had no clue? All we can surmise is that he had such good lung capacity from all of his running, his symptoms were more mild. Plus he had been coughing for so long that he had sorta learned to handle the coughing episodes. Several people have said he has a high tolerance for pain. I am starting to believe he might be part super hero.
Once we received the official positive Pertussis diagnosis, our family took every precaution to avoid passing the illness on to anyone. I sat through intense interviews with the health department. We contacted anyone who had had any type of “prolonged exposure” to Bensten. Despite being symptom free, Izzy, Lil and I took antibiotics to reduce any potential risk of spreading Pertussis, since the incubation period is long and not terribly specific!
I can now declare Pertussis the scariest illness I have ever experienced as a parent. No fever. No aches. Perfectly clear lungs. But the most intense, oxygen stealing cough. And really no medicine to help the symptoms.
Because I am insane, we attempted our trip to Bald Head Island. No one was contagious- and I thought the salt air would help heal them. We made it almost 5 days, but then packed up our nebulizer and headed home. Everytime one of them coughed, I would literally hold my breath and ask if they are okay….and only breathe once they gave me the thumbs up. It was dysfunction at its very best!
Our house was upside down by this point. No one slept. Lance had moved into Boeden’s room. Boeden was sleeping in my bed, so I could get to him immediately when he had an episode. The episodes scared me, but they left Boeden literally shaking.
And then one night, one of his episodes startled me just so…..and my back totally seized up. I literally could not move. Such a helpless feeling. I thought Advil would fix me, but I ended up in my orthopedic surgeon's office with a tear in my disc and a round of high dose steroids.
No sooner had the boys’ Pertussis symptoms sorta stabilized, another upper respiratory bug hit them. They had all been on several rounds of steroids, which takes its toll on the immune system. I initially worried it was a Pertussis relapse of some sort. But it was indeed just a run of the mill cold.
Thanks to my heavy duty steroids, I caught the cold- no big deal. But a cold plus a bad back is a kinda big deal….A simple cough or a sneeze would cause me to spew spurts of profanities. It was really embarrassing. And painful. Thankfully the cold only lasted a few days but it gave me time to reconsider our upcoming vacation. It broke my heart, but we canceled our lake vacation- my very favorite week of the year! Just as we would have been leaving town, something else happened in my ridiculous back, and my trap muscle seized up. You could feel the lump. I started anti-inflammatories and lidocaine patches around the clock. I think getting up at least 4x every night for 2 months had started to take its toll on me! I was feeling approximately 107 years old at this point! But I was so thankful we had canceled the trip!
Poor Bensten was logging 30 miles a week in June and was so excited for the upcoming cross country season. In early August he could barely run one mile without a coughing fit. I honestly don’t know what Boeden would have done if this had happened during the school year. 5th grade drop out sounds probable! We took Bensten and Boeden to the pulmonologist for Pulmonary Function Tests (PFT) and a full lung work up. Thankfully it looks like they are going to make a full recovery from the summer from hell! Not sure I will ever recover from the summer of no sleep! And Lance is still not well. He was prescribed new meds yesterday- he is on his 3rd secondary infection….Is that even English?
Here is my point.
Cases of whooping cough are definitely on the rise- but I don’t think people even know what to look for. I didn’t! It started as such a mild cold. Then a cough. It was such a gradual progression, that it literally sucker-punched us. Thank GOD there is a vaccine for most people. I cannot imagine if my kids had been babies and caught this miserable illness. And despite the danger the pertussis vaccine may or may not pose to my kids, we are exploring Izzy getting vaccinated. She will be working in the pediatric ER. She will certainly see kids’ with whooping cough. And she saw first hand how it stole an entire summer from her brothers. It literally rocked her mom to her core. It left her dad still gasping for air 7 weeks post diagnosis.
And FYI, adults should get a pertussis (Tdap) booster every 10 years. I know I got one every time I was pregnant, so I just started getting the booster. Lance and the boys all have 5 to 10 years of immunity now. But pre-teens are supposed to get a booster as well. I am knee deep in research as to what to do to keep my kids protected….but please take my word for it- keep your vaccines up to date!!!
So this has been a rough summer over here. There were weeks I didn’t even contemplate the next time I would bake. But we just got Lil back to school. Bensten has started back with his cross country team. I am in PT and saw my orthopedic surgeon on Monday. I adore her- she knows I need to be able to move, so while I am hoping I am on the mend, she always has a fancy injection up her sleeve. So I plan to be back baking on FRIDAYS for the school year!! I might do Flash Bread days here and there…I am still figuring it all out, but promise to keep you in the loop via Instagram and very long winded emails! ;)
I have missed our bakery family! Hope you all had a great summer! Next week’s menu is available TODAY at 2pm!
xo,
Heather
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