Trust Your Gut ahead of "It's probably.."

Personal stories of individuals and families affected by Kawasaki disease
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amac
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Joined: Thu Mar 19, 2015 1:50 pm

Trust Your Gut ahead of "It's probably.."

Post by amac » Thu Mar 19, 2015 2:33 pm

On March 3rd our son Quinn turned 7. His birthday party was planned for the following Sunday from 2-5pm with bouncy castles, 15 friends and a small ATV (Kawasaki - what are the odds) which he had been politely asking for.
The Thursday prior to his party he woke with an extremely sore neck on his left side. My guess was he had slept poorly on that side and gave him some Ibuprofen. The following couple of days he seemed to be managing reasonably well after the local doctor said its probably the flu. Yet he did not show any other symptoms of the flu.
Sunday morning came and he was not well. I worked until 1 and came home to find him lethargic and with his lymph nodes swollen and ear area a little red. His temp was around 102. I asked my wife (a registered nurse) to take him immediately to the clinic. It was easier for me to notice the change as I was away 10 hours a day and could notice any whisper of a change in Quinn's appearance.
Quinn missed his entire birthday party as he was required to wait 2.5 hours waiting for the doctor. Triage nurses? What's the point!
Some alternate ideas were offered by the doctor but most related to taking Tylenol and Ibuprofen and stay at home.
By Tuesday he had developed another higher fever spiking at 104 and again back to the doctors. They took a blood sample and sent it for evaluation (which came back negative).
I returned home and following another doctors visit called them and spoke with the after hours service. Fortunately the lady on the other end recognized my voice and told me rather than put me on hold for an hour or two to speak with the triage nurse she would put me straight through to the Doctors cell phone.
I detailed the circumstances and he instructed me to immediately take him to Seattle Children's Hospital where he would call ahead to prepare for Quinn's arrival.
My wife Amanda took him there and I remained at home with our other 3 children to await some news.
Quinn was admitted where they took a blood sample and did the labs.
After work the following day I drove to SCH where I found Quinn now had red eyes. He was warm but okay for the moment. I spent the night with him and Amanda planned the days.
Wednesday I texted my wife to research KD as I was consumed with what Quinn might have acquired. As his symptoms were atypical of anything and similar to various other diseases I stumbled across KD but yet Quinn hadn't exhibited enough of the tell tale symptoms.
The cardiologist, infectious diseases and ICU doctors had no decisive answer as they couldn't properly diagnose him. Basically because he had not yet shown all the signs of KD.
By Thursday afternoon his feet had begin to swell and a rash had formed across his upper arms and stomach. He right lymph nodes were now also profoundly red and swollen. The doctors concluded it was more than very likely Kawasaki Syndrome and commenced a course of Benadryl followed two hours after with Immunoglobulin. I had heard there was a chance of anaphylaxis response to the IVIG.
Friday morning at 2am they commenced with the Benadryl followed at 4am with the IVIG. By 5am his heart rate had dropped from a normal rate of between 70-90 to 42-43 beats per minute. I sat on the adjacent bed as I watched a team of 10 doctors and nurses observing him, waking him to try and increase his heart rate, asking him questions to check his responses but mostly to increase his heart rate. It rose to 70 momentarily then he fell immediately back to sleep where it fell back to the forties.
The cardiologist determined the low heart rate was due to the cocktail of drugs he was on and as Quinn appeared to be sleeping contentedly they should leave him to sleep.
I can't describe how helpless I felt watching my son in this condition. We had facebooked, texted and emailed everyone to ask for their prayers.
They decided to stop the IVIG for now but would place him back on it later that day.
I returned from work that night and they had him back on it and it continued until midnight. By the morning the redness had gone, the lymph nodes were down slightly and his feet were no longer swollen. Also his temperature had dropped to normal, heart rate back in the 80's and complexion normalized.
36 hours later a little after midday Sunday 17th March, 2015 my son came home.
So 7 days after Quinn's birthday he had a birthday party which he missed because he fell ill. 7 days later he is back home and the cause is a mystery.
Thankfully we did not sit back and take the local clinic doctors advice that it was the flu, or strep throat or a pulled muscle.
It was Kawasaki Disease and our child survived and I feel so much empathy and sympathy for those who have lost and suffered the same or worse than us.
As I write this Quinn is in my office assembling Lego with my receptionist as he cannot be around other children for a week. But he will be back at school next Monday with the greatest 1st grade teacher I know. Ms. Lisa N. came to the hospital and spent a few hours with him on the Friday with cards hand written by every student in his class. It greatly lifted his spirits.
Now Quinn take two aspirin tablets every day, temperature take between 2-4pm daily and a couple of check ups with the KD researchers in the next month.
Quinn appears to be fine. Because we caught it in time. Under the 10 day window before longer term CAL's could be an issue later in his life.
Trust your gut... if it seems a major concern don't just take the advice of a doctor or a triage nurse who says they've seen this kind of thing many times. It could be your child's life.

With the most amazing and exceptional thanks to all those Doctors, Nurses and other staff on the 4th floor of Seattle Children's Hospital.
And of course to God for answering all those prayers.

And we continue to pray for all of you who are going through this as you read this..

blink_293c
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Re: Trust Your Gut ahead of "It's probably.."

Post by blink_293c » Thu Mar 26, 2015 1:05 am

I 100% agree with you! Took my 4 year old son, Ayden, into Urgent care last Friday night for a high temp. Tested for strep and influenza b, both negative...and sent home with "it's probably" a mirror of the flu. The next day as my son got more and more uncomfortable and irritable, I knew. This was not my sick kid, even with strep, flu, etc....he was just not right. Thank goodness we got the lymph node in the ER Saturday afternoon and our ER doctor was smart enough to send us to University of Iowa Children's Hospital misdiagnosing as a Retrophylangeal Abscess. As the antibiotics ran through and that temp was still there and with a vengeance, by day 3, I was noticing the other signs. The redness, rash, and the conjunctivitis....by the morning of day 5, he looked like a strawberry, and not just his tongue. The amazing Dr's here picked up on the signs immediately and we had the IVIG going yesterday (Day 5) going by 3 PM.

We're not out of the woods yet, but as I think back, what if I had let it go? What if I hadn't trusted that gut feeling and took him into the ER in the first place? I am so thankful that I was sent to an amazing hospital that is actually familiar with this and that I feel I can trust. I'm about 28 hours post our 1st and hopefully last IVIG, fever's gone and my little warrior's back.

Question: Do you have other small children? I've been doing some reading and am curious to find out more about the possible genetic links with this disease may be....such a mystery and to see our children go through it, is heartbreaking.

Thanks for sharing your story and I hope Quinn's still doing good and is having a good first week back at school! Good Luck and prayers sent.

P.S. Thanks for letting me share my story, I didn't mean to ramble but....I'm still kind of processing it all!

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