5/19/18 - A Bigger Heart

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My girlfriend this weekend, let's me lay spread out on the bed without all the bean bags and positioning pillows; like this. I stretched out long and tall. Mom and Dad are impressed with how long I am already. I'm almost two foot tall! I need a new bed soon, here at the hospital. I'm starting to outgrow this one, but it will still be okay for a little while longer. 

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With my growth, comes a few new changes. Good ones. I started getting my milk feeds back, as you know, and have since been increasing how much I get each time to try to get back to "full feeds". Because I have grown, full feeds are now 70ml every three hours. I am currently at 25ml every three hours and working towards that goal. Hopefully, by next week, I will be at that amount and get to come back off of the TPN. Please pray I can digest the milk well, not retain any extra fluids because of the feeds, that my numbers stay within the appropriate ranges and that I don't throw up my feeds. The other change, because I have grown, is a big one! I can now have a heart gifted to me from a much larger donor...a donor up to about 55lbs. This is bad and good. It's bad because it means, not only have I grown, but my heart has stretch out more and is weakening (bigger heart, bigger space for a new heart). It's good, because now I may have a better chance of getting a heart sooner because there is a wider spectrum of hearts available to me. So, please pray a heart comes soon! And pray for my someday donor's family to find comfort in knowing they may save my life. 

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I am working on this whole Binkie thing again today, also. I'm actually starting to get the hang of it! I can hold it in my mouth now and am starting to suck on it, too. It's very exciting! We will keep trying it out every day. 


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I want to share some statistics with you today about Pediatric Organ Donation. It is of course, a difficult subject. The loss of a child (like me) is tragic, and the option of organ, eye and tissue donation is especially hard for their parents, who have to make the decision to donate or not...

  • Currently, nearly 2,000 children under the age of 18 are on the national transplant waiting list.
  • 1,878 children received transplants in 2016.
  • There were 934 pediatric organ donors in 2016. Although they ranged from newborns to age 17, most were age 11 to 17. 135 pediatric organ donors in 2016 were babies under the age of 12 months.
  • Body size and donation: The size of the body and the organ are taken into account when matching donors to recipients. That's why very small children most often receive donations from other young people—although older children and adults can often match. Sometimes, children can receive donations of partial organs such as a piece of a liver or lung. 
  • Most children under the age of 1 year are waiting for a liver or a heart.
  • Most children age 1 to 10 are waiting for a kidney or liver, followed by heart.
  • Most children age 11 to 17 are primarily waiting for a kidney, followed by a liver.
  • Pediatric donation is different from adult donation. When a potential donor is under the age of 18, the parent or legal guardian always has to authorize the donation.  In many states, people younger than 18 can sign up as organ donors when they get their learner's permit or driver's license. However, in most states if the child dies before age 18, the parents must make the donation decision.
  • A heart transplant is a surgical procedure in which a failing, diseased heart is replaced with a healthier donor heart. Currently, 4,000 people in the United States are on the national transplant waiting list for a donor heart. What are the basics of heart donation? Read below for more information.
  • A heart transplant requires a heart donation from an individual who is declared brain dead and on a ventilator. Most transplant candidates wait for some length of time because there are more people in need of a transplant than there are deceased donors. Transplant candidates are placed on the national transplant waiting list. Unlike many waiting lists, the national transplant waiting list does not work on a first-come, first-served basis. When a donor heart becomes available, transplant candidates are matched based on three factors: medical urgency, distance from the donor hospital and pediatric status. Blood type, body size and other medical information are key factors in the matching process for all organs. United Network for Organ Sharing (UNOS) manages the national transplant waiting list, matching donors to recipients 24 hours a day, 365 days a year.
  • Patients are often ready at a moment’s notice to receive their donor heart. Transplant must occur within 4 to 6 hours after the donor heart is recovered. Following surgery, many recipients are feeling better within a couple of days and can be released from the hospital in 10 to 14 days.
  • Heart transplants are lifesaving and life-giving. Donors give years of life to heart recipients and their families. According to the National Heart, Lung, and Blood Institute, there is an 85% survival rate at one year post-surgery. To protect the health of the donor heart, transplant recipients take medications after transplant. The medications help reduce the risk of complications after transplant.

Signing up on your state registry means that someday you could save lives as a donor—by leaving behind the gift of life. When you register, most states let you choose what organs and tissues you want to donate, and you can update your status at any time.

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