TUESDAY, DECEMBER 21, 2010

Well today was the day. Dylan has been listed for transplant. He is officially on the list. He PELD score is very low.  His Liver function is just still too good, no make that perfect, but with those varices lurking in his stomach it is making everyone a little nervous.  He would never really get an offer where he is now, but have been told that they have gotten offers for and transplanted kids with numbers below zero. So now we start the work-up on Noah all over again. It was completed three years ago and he WAS a match so we are hoping for the same results. Our goal is to get this done in time to avoid another endoscopy, but more importantly another bleed. A bleed could be devastating or even fatal for Dylan. 

Our next step is to have an EKG, ECHO, CT scan and tons of labs done on Noah. We are hoping to have it done in one day to avoid multiple trips and wasting time. That should let us now if everything is still a go. IF we get an offer in the mean time we will take it, but not likely to happen with Dylan's score where it is. It means the world to us that Noah is a possible living donor, but it does complicate things. Noah will be out of commission for almost 3 months. No work. I will not be working. I will be taking care of both of them. Not sure what our future holds but I am very happy it will be with a healthy liver for Dylan.

My little boy is now a week past his fifth birthday! I am in complete shock. I don't know where all the time went. It is crazy to think of the road we have traveled down.  

Dylan has taught me so much about life. I am truly a better person from being his mother. I thank God for sending Dylan to me. For letting me have the true privilege of being his mother. Dylan a such a strong boy and has gone through so much and no matter what everyday he smiles. He finds something that makes him happy. 

Dylan is doing great as far as his health goes. We have had a quiet uneventful month and that is all I can ask for. We will see Dylan's GI doctor in July for a follow up and labs. I am not expecting anything from the norm. We continue to watch for bleeds and fevers, but over all not bad.

Happy Birthday D-Man!!!         

-Amber   

Today was Dylan's six month follow up of his endoscopy. We were very anxious about today since the last one was such a nightmare. What a difference an anesthesiologist can make. The doctor was amazing. Hands down. He listened to us and did everything he could to make it as easy for Dylan as possible. It turns out his little boy had lymphoma and has a very large spleen as a result. He treated my child as if it were his. He also gave us his card so the next time (6 months from now) we can request him. 

So the findings...Dylan's varices are a little worse than 6 months ago. Not too bad but slightly bigger. He also found "coffee grounds" in Dylan's stomach. There were no areas that looked "angry" or like they had bled. We don't know where the blood came from.  He wants us to keep a very close eye on Dylan.


-Amber

April is Organ Donation Awareness month, in honor of that here are the top ten myths about organ donation. Please help to spread the word about being a donor. You could help save the life of someone like Dylan.

www.donatelife.org

It can be hard to think about what's going to happen to your body after you die, let alone donating your organs and tissue. But being an organ donor is a generous and worthwhile decision that can be a lifesaver. Understanding organ donation can make you feel better about your choice. If you've delayed your decision to be a donor because of possibly inaccurate information, here are answers to some common organ donation myths and concerns.

Myth No. 1. "If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life.They'll remove my organs as soon as possible to save somebody else."

Reality: When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth No. 2." Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered. "

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3. "Organ donation is against my religion".

Reality. Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy. Another option is to check the federal Web site OrganDonor.gov, which provides religious views on organ donation and transplantation by denomination.

Myth No. 4. "I'm under age 18. I'm too young to make this decision."

Reality. That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5." I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated. "

Reality. Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For eye donation, an artificial eye is inserted, the lids are closed, and no one can tell any difference. For bone donation, a rod is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Because the donor is clothed and lying on his or her back in the casket, no one can see any difference.

Myth No. 6." I'm too old to donate. Nobody would want my organs. "

Reality. There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth No. 7. "I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues. "

Reality. Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth No. 8." I would like to donate one of my kidneys now, rather than wait until my death. But I hear you can't do that unless you're a close family member of someone in need. "

Reality. While that used to be the case, it isn't any longer. Whether it's a distant family member, friend or complete stranger you want to help, you can donate a kidney through certain transplant centers.

If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and make sure you're giving away your kidney out of pure goodwill and not in return for financial gain. You will also undergo testing to determine that your kidneys are in good shape and that you can live a healthy life with just one kidney.

You can also donate blood or bone marrow during your lifetime. Contact your local chapter of the American Red Cross for details on where you can donate or sign up.


Myth No. 9. "Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest."

Reality. The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 10." My family will be charged if I donate my organs. "

Reality. The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient.


How to donate
Contrary to popular belief, signing a donor card or your driver's license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. Hospitals seek consent of the next of kin before removing organs. If your family members know you wanted to be a donor, it makes it easier for them to give their consent.

If you have no next of kin or you doubt your family will agree to donate your organs, you can assign durable power of attorney to someone who you know will abide by your wishes. A lawyer can help you prepare this document. 

-Amber

It has been awhile since my last update. Dylan recently has taken a scary turn. It was a few weeks ago that Dylan woke up with broken blood vessels all over his arm. He had not done anything to produce that so we were pretty concerned. We had labs done and realized that his platelets had dropped yet again. This took him to the low 70's. Normal platelet range is from 140-500. Along with this drop his red blood cells, white blood cells, hemoglobin and hematocrit have dropped as well.

The doctors can not tell us he if does or does not have a bleed somewhere internally. It is a wait and see game. Stanford is of no help at all because they claim his liver is doing well. For the most part they are correct. Dylan's liver function is normal, but this is a direct result of his spleen compensating for his liver. So for now we wait. I will update soon.

-Amber