A necessary lie… and an answer

On the morning of day 19 of this mysterious illness, Poppy’s pulse ox alarm (monitors her oxygen saturation and pulse) started beeping and her saturation was in the low 80’s – and then i noticed she wasn’t breathing. I shook her and she gasped and this went on for half an hour until her breathing regulated.

Day 20, yesterday, the same thing happened at 4 am and again at 8 am. Her PCP agreed that she needed to be seen, and i drove her to Doernbecher – where she has a couple specialties (neuro Opthamology, sleep medicine, and a NEW ENT).

I had never been to the ER at OHSU. It is where my dad died suddenly, just two years ago, and my mother had not been able to return for any of Poppy’s appointments there since. It was too painful for her – and I didn’t want her to ever have to go back there. But she wanted to be there today – and so poppy and my mom and Traci and I walked through the hospital to the emergency elevator and I watched the trauma of that night come flooding back for her and my heart broke even wider. Deeper. More.

I pictured him standing where we stood and I sent out a plea to him to guide us toward an answer.

From the moment we arrived, the nurse and doctors took my concerns and her condition VERY seriously. They looked at her entire history, pulled the labs from the last 20 days, and consulted with Infectious Diseases right away. The two doctors that she saw agreed that they were concerned it was a missed case of Kawasaki and wanted to run further blood tests.

Which meant a pinch (blood draw).

Which I promised her from the driver seat on the way there that she wouldn’t have to have.

Because the fear and anxiety that I sit in 24 hours a day for nearly 6 years now is NO place for a child. She deserves to feel safe. And so I lied in hopes that it might be true. She had JUST had a blood draw with extensive tests less than 48 hours prior.

It wasn’t. When they came in to draw blood I had to hold her limbs and body still while she screamed and tried to thrash. This same child, up until 15 days ago – would sit calmly, on her own, not making a peep when she had a blood draw or an IV placed. She is traumatized from the constant needles and doctors and nurses and vitals and hospitals this month to the point that she flinches and recoils when I reach out to brush her hair from her face, or roll a sleeve, or wipe her mouth.

After a few hours, the doctor returned. Her blood work came back and she tested positive for Mononucleosis – the kissing disease! The Epstein barre virus, which 85-90% of Americans contract by age 40, often times lies dormant in people, but sometimes can lead to Mono. It’s uncommon (<5%) in children under 10. 90% of cases are seen in pre-teen through high school aged individuals. I had it in my twenties.

Mono explains EVERY symptom she has had in the last 9 days. The fever (which can last the better part of a month!) lethargy, swollen neck, drooling, muffled speech, congestion, loss of appetite, etc.. It also explains her belly pain, as mono can cause the spleen to swell so serious precautions have to be taken for the next few months to protect her from any impact to the belly that could cause rupture.

When I had Mono in my twenties it was HORRIBLE. I could barely get out of bed for a month and the fatigue lasted way beyond that. It was 6 months before my energy level returned.

I want Mono to explain everything since December 11 when Kawasaki was originally suspected. But being that she tested negative for mono just 2 days ago ( mono tests positive 7-10 days after symptoms present) it’s more likely that this set in because her immune system was weakened by whatever made her sick originally. Which still doesn’t completely rule out Kawasaki as the original illness – but does explain why she started to get better and then became worse.

The kind doctors put in a referral right away with a new cardiologist!

The apnea is still really scary. Thankful we have oxygen and monitoring. The idea is that the prolonged illness has just worn her little body down and breathing is harder than its usual hard:(

In the short – an answer to why Poppy is still so sick. She likely will be for awhile still. Months maybe, until she can return to regular 5/6 year old life. But the continued fevers (the most worrisome symptom, as they elevate the heart rate and deplete the body) have been explained. I can treat her fever without fear that I am masking something bigger.

She lost over 5 lbs in the last 20 days! Thats a lot for a little one who hasn’t gained weight in over a year! Pushing HEALTHY, WHOLE foods when she is ready is a top priority and I would absolutely welcome help with meals from my community! I haven’t left her side for more than a minute and we all have suffered nutritionally.

The road is still long and a little rough and my eyes are open for the serious complications that can come with Mono and untreated Kawasaki – but I am holding in my heart that after an echo I can quiet the Kawasaki fear and focus on helping her rest and heal from this monster of a month.

2017 was an intensely transformative year. It began with a move, and her second and final syndactyly surgery – seeing her 10 fingers for the first time, and preparing for Kindergarten. The middle was brutal with the attempted suicide of my son and his heartache and depression and anxiety, followed by continual illnesses for both of my children throughout the end of the year. I am happy to grasp the idea (though time and space has always seemed arbitrary) that this year can close and something new can begin in its place.

May it be lighter. Calmer. Restorative.

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4 thoughts on “A necessary lie… and an answer

  1. Our thoughts and prayers are with you guys always. I can understand your frustrations as we went through the constant hospital stay and surgery after surgery this past year with our daughter. Please hug sweet Poppy for us.

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  2. So happy to hear you have an anaswer to what’s going on. We sure miss seeing her at school. Bethany tells us almost every days she knows how to spell Poppy’s name and asks when she gets to see her again. Hope now that you know it will be a quick recovery for your sweet little lady!!

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