Baby Kaylynn needs our help

Over the Canadian Thanksgiving weekend, my 5-month-old niece, Kaylynn, suffered a completely unexpected seizure and was rushed to Windsor Metropolitan Hospital.  Kaylynn was diagnosed with a condition called hyperinsulism and has needed to be on a constant life-saving glucose drip and feeding tube since then.  She has been in the hospital since October 8th and no cause or treatment plan has been determined yet, so it’s likely Kaylynn and family will be spending Christmas there as well, along with her big brother Hudson, her mom Chelsea Dupuis, and her dad Kevin Paquette.

So many of you have generously reached out to see how you can help.  In order to give everyone a way of offering their support, I’ve created this campaign to help Baby Kay and her family at this stressful and scary time.
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WHAT HAPPENED

After Kaylynn’s very scary episode it was quickly determined that she didn’t suffer any long-term effects from the seizure itself, but doctors quickly discovered the cause to be extremely low blood sugar, a very serious and alarming issue for a baby of Kaylynn’s age.

Low blood sugar can often be caused by infections and this would have been the best possible diagnosis for Kaylynn. Unfortunately, her doctors quickly ruled this out and began immediate further testing as Kaylynn’s levels continued to be dangerously low.  Since the seizure, Kaylynn has remained in the hospital so doctors can continue performing tests while they closely monitor her. Kaylynn is on a constant glucose drip and a feeding tube to keep her safe.

 Kaylynn’s doctors quickly suspected an insulin issue and were able to confirm this, and felt they knew the cause. Kaylynn and family were transferred to London Children’s hospital on 17th of October to began treatment.  Unfortunately, upon arrival it was discovered that the initial diagnosis wasn’t as firm as they had thought and doctors immediately began exploring other causes and continued testing.

 Despite not knowing the cause of Kaylynn’s condition, doctors felt it was important to try to find a way to normalize her blood sugar as soon as possible, so they wanted to try a medication to help stabilize her insulin levels. Due to Kaylynn’s age, they had to wait for approval from Health Canada to administer the medication.  It seemed like a triumph to finally get the approval! But sadly, after several days, Kaylynn’s levels dropped critically low when they attempted to take her off the glucose drip and her doctors deemed the medication ineffective. To add insult to injury, this extremely costly medication wasn’t covered by insurance.

Around this time Jinx, their much-loved family pet, started to show signs that his previously diagnosed enlarged heart was taking its toll on his tiny Jack Russell body.  Chelsea and Kevin took turns making the 2-hour drive from London to be with Jinx at home in Belle River every day. It broke all our hearts on October 25th when they had to make the decision to end Jinx’s suffering. He is very much missed.

As if everyone hadn’t been through enough, Kaylynn became sick with croup on October 25th. To help fight off the infection, she needed a dose of antibiotics and steroids to help her recover. The infection and medication caused her blood sugar to be erratic and further treatment had to be put on hold.

As Kaylynn was recovering, doctors received test result back that indicated Kaylynn is suffering from congenital hyperinsulism. This is an extremely rare condition and affects only approximately 1 in 50,000 people…and is even less prevalent in infants.

THE DIAGNOSIS SO FAR

Congenital hyperinsulism is an overproduction of insulin. Insulin is a hormone produced in the pancreas that is in charge of regulating the amount of glucose in the blood. Of course you’ve all heard of diabetes, which is a lack of insulin.  In Kaylynn’s case, her body is over-producing insulin when it’s not needed, causing her blood-sugar levels to drop to life-threatening levels.

This condition is caused by a gene mutation. There are several different mutations linked to congenital hyperinsulism and each one causes excess insulin for a different reason. Doctors decided to do genetic testing to determine which gene mutation Kaylynn has so they can determine a treatment for her.  Unfortunately, this testing isn’t available in Canada.

NEXT STEPS

 Once again, approval was needed from Health Canada to have Kaylynn’s blood sent away to be tested.  This generally takes months and test results originally weren’t expected until March. However, after approval was given, Kaylynn’s amazing doctors were able to convince Health Canada that the results were needed urgently and results are now expected some time in the next four weeks.

 Once results are in, Kaylynn will be sent to another hospital to have specialized medical imaging done to further determine the cause of her condition. At this point, it’s undecided as to whether Kaylynn will be transferred to Edmonton or Philadelphia.

Unfortunately, no decisions can be made until after the genetic testing results are returned. Only then will an application be able to be made to OHIP and their approval will take about a month to receive and Kaylynn will need to remain in hospital.  After Kaylynn is transferred and the imaging test completed, doctors will come up with a plan of action, which will almost certainly include surgery.  

If she is transferred to Philadelphia for the test, the surgery will be able to be performed there.  However, if she is sent to Edmonton, she’ll then be sent back to Ontario after the test and possibly another hospital for the procedure. Please keep approval for Philadelphia in your positive thoughts for Kaylynn, as it is the world headquarters for hyperinsulism and they have highly-specialized doctors who have done hundreds of surgeries similar to what Baby Kay will need.

LONG-TERM OUTCOME

Depending on the test results, Kaylynn may end up making a full recovery with few long-term issues. However, there is a very real concern that she’ll need to have her pancreas removed, which will result in some very life-altering changes for Kaylynn and her family. This is incredibly scary, but at the same time, we are so blessed that Kaylynn is likely to go on to lead a full life after this awful situation is over.

WHERE WE’RE AT NOW

So for now, we wait. Kaylynn remains in London at the hospital, on her life-saving glucose drip and feeding tube.  Mom, Dad, and Hudson are there with her and are all so grateful for the support of their friends and family…especially Grandma Kathy, who has been with them every day and most nights at the hospital.

Kaylynn's doctors are currently trying another long-term medication to normalize her blood sugar. They have been reducing her glucose drip daily to test its effectiveness. So far her levels have remained within a safe range, but the results haven’t been as inspiring as doctors would like.  They’ll continue to lower her drop each day and monitor her levels. Please keep your fingers and toes crossed that this medication is the one that works!

HOW YOU CAN HELP

With medical bills in the thousands already pouring in and no way of telling what may or may not be covered by OHIP moving forward, any amount you can give will be so appreciated!

With their recent move to Belle River from Bowmanville, the Paquette family has spent less time in their new house than they have in the hospital. Chelsea is still on maternity leave from her teaching position and Kevin has been taking time off work to be with them in London.  

As they say…it never rains, it pours. Having just started a new job with the Greater Essex County School Board after their move, Kevin is not entitled to any sick or vacation days and is not covered by the employee insurance plan. While they do have a current private plan, it covers just the bare minimum and has so far proved unhelpful.

They have little income coming in and huge sums of money going out for gas, parking and food while they’re away from home and travelling back and forth from London to Belle River. They will be paying out of pocket for travel to Edmonton and/or Philadelphia. With so many weeks, possibly months, to go and so many financial uncertainties in travel and medical bills, I know they can use all the help we can give.

THANK YOU

So much love and gratitude to you all for your support. Your well wishes, thoughts, prayers, positive vibes are so appreciated. Please keep them coming!

I’ll be posting updates here as often as we have new information. If you have any questions, please don’t hesitate to contact me, Tara, directly by email at [email redacted], by text at [phone redacted], or via Facebook (Barefoot T Dupuis).
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UPDATE:  November 16, 2018

At this time both Baby Kaylynn and brother Hudson are recovering from colds, so Chelsea and Kevin have requested no visitors for the time being. Thanks for your understanding!