This is Piper

This is Piper.  Piper is an adorable, sweet, fun loving six year old…….even with what is happening to her.  Before March 23, 2020 this sweet little pixie had only been sick maybe 3 times in 6yrs.

On the 23rd of March, Piper started having seizures.  The first couple of weeks there were only one or two a day (only!), after about a month of medication they had gotten far worse.

On the 21st of April she was admitted to the PICU at Wesley Hospital in Wichita.  At this point she was having almost continuous seizure activity.  This was all occurring during the peak of Covid-19.  Melinda and Jacob had to alternate staying with her as they would only allow one parent at a time. 

After having no progress at slowing or stopping the seizures she was put into a medically induced coma for over a week.  On the 2nd of May they thought they had a diagnosis of Rasmussen’s Syndrome.  Thankfully, this diagnosis turned out to be incorrect!

On the 15th of May, the decision was made to transfer Piper to Children’s Mercy Hospital in Kansas City.  The hospital allowed Melinda and Jacob to both be with her while they waited on the ambulance to transfer her.

After being transferred to Children’s Mercy, It seemed that she was doing well for a few days.  She was feeling better and being more vocal.  But even though it seemed like she was making progress the EEG showed that she was having continuous subclinical seizures.  There was no outward sign, but subclinical seizures happening with this frequency will lead to breakthrough seizures.  So for the second time, Piper was placed into a medically induced coma using pentobarbital.  This time for 5 days.

At this time, Piper is doing better, but is still having seizures.  She is being scheduled next week for surgery to implant a  VNS (Vagal Nerve Stimulator) device.  Hopefully this will help reduce the number of seizures and even stop or shorten them when they happen.  Her doctors have still not given them any indication of when she will be able to go home.

During this very stressful time, Melinda and Jacob have had to put their jobs on hold.  Bills continue to come in and as we all know, medical insurance is not going to cover it all.  Jacob applied for unemployment but has not started receiving it yet.  Piper’s Uncle is staying with her older brother (Nathan, 13) and sister (Jenna, 11) and their Aunt Nicole and Aunt Rose are checking in on them daily.

This has been a very long 2 ½ months for this family.  I know that times are difficult for everyone right now.  But if there is anything that you can do to help my cousin’s family, it would be greatly appreciated.  Any amount will help ease some of the financial stress so that they can focus on Piper. 

And if you are a prayer warrior, this little girl needs an army.  They do not know what started the seizures.  Wouldn’t it be wonderful if they stopped just as suddenly!

Donations

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  • Dustin Arbuckle 
    • $50 
    • 1 mo
  • Sharon Bartusek 
    • $15 
    • 1 mo
  • Anonymous 
    • $50 
    • 1 mo
  • Larry Larue 
    • $20 
    • 1 mo
  • Rana Razek 
    • $20 
    • 1 mo
See all

Organizer and beneficiary

Teresa Latimer 
Organizer
Marthasville, MO
Jacob Taylor 
Beneficiary
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