Friday, October 30, 2015

For all who will be missing their child or loved one tomorrow!

This will be the first Halloween without you. We’re supposed to be in our temporary home near the hospital getting ready for Halloween tomorrow.

But we are not!

We are at home without our beloved son William aka (Thalack known to the gamer community). We will set a place next to your chair and table with the traditional apple cider, a plain cake doughnut & caramel popcorn. We will watch the horror movies we all loved so much. We know you will be joining us in spirit and this is the only reason we’ll be doing this for Halloween. But it will not be the same knowing you will not be here with us in physical form. We will miss seeing you play your competition games with your friends and noticing all the fun Halloween extras the gamers added in for the day.

Our hearts goes out to all who will be missing their child or a loved one tomorrow as we see all the Halloween costumes and those celebrating. We will have our memories tomorrow!

Friday, October 23, 2015

In Memory of William aka Thalack, I can only hope today's blog will INSPIRE in his name! Even if it's only one person & a life saved!



*Ask questions! Don’t ever be afraid or shy away from asking questions about your loved ones care and make sure to get information on ALL the medications that are prescribed to them!

*Ask about procedures!

*Research…Research…Research! You have the whole web to get information from. It will at least make you think and give you the ambition needed to start making a list of questions to ask!

You can be proactive by researching procedures done to a loved one and don’t have to feel like you are in the shadows and your opinion does not matter. Because, it’s okay to question and challenge doctors and nurses (Even the hospital staff). NOT ALL DOCTORS OR NURSES ARE THE SAME! Like so much in life there are good and bad apples. “EGOS” OFTEN GET INVOVLED THAT CAN HAVE A DETRIMENTAL OR LIFE THREATENING RESULT ON A LOVED ONE OR FRIEND. Be INSPIRED! Be PROACTIVE!

**Example: Let’s say hypothetically a Remodulin dose was lowered by half in the hospital within a day. The order was given by one of the transplant teams. Yet, here is what the Remodulin site says …

"Avoid abrupt withdrawal or sudden large reductions in dosage of Remodulin, which may result in worsening of PAH symptoms. Titrate slowly in patients with hepatic or renal insufficiency because such patients will likely be exposed to greater systemic concentrations relative to patients with normal hepatic or renal function."

Hypothetically the surgeon is unaware this order was given by doctors on the floor. When he/she is informed he/she wants to know who gave the order! He/She then makes sure all the doctors on the floor taking care of the hypothetical patient know, “this could cause irreversible decompensation to hypothetical patient’s lungs.”

Not only do they lower the dose of the hypothetical patient, when they revert to IV instead of sub-q, they again didn’t follow suggestions posted on the Remodulin site.

"Remodulin offers continuous intravenous (IV) infusion with the stability of a 4-hour half-life.1 With the IV administration; a flexible catheter is surgically placed into a central vein in the chest

The Remodulin is instead given through the IV in the hypothetical patient’s arm.

The surgeon is unaware the doctors on the floor are lowering hypothetical patient’s Remodulin dose until he/she comes in and is asked by hypothetical parent if he knew about it, and had given this approval. Hypothetical surgeon didn’t know…not until it was brought up to him/her. I REPEAT “ASK QUESTIONS,MAKE SURE EVERYONE IS ON THE SAME PAGE!

*Most hospitals now have accounts that you can sign into to keep track of your loved ones lab tests and procedures. KEEP TRACK OF THIS!

*There are a number of hospitals that will allow you to stay with your loved one 24/7. If you’re at a hospital that allows this…”DO IT! Take turns with family members.”

*If you feel something isn’t right and you aren’t getting satisfactory answers to your questions from the hospital staff, nurses, doctors; start calling for outside help. Ask friends, ask other family members, ask co-workers if they have a doctor they know that you can speak with or know of anyone who might be able to help. Maybe someone at a Patient Advocacy group, company, or Patients Frist org.

*Get a second or even a third opinion if your instinct is kicking in telling you… something feels wrong. It could end up that you need to get your loved one transferred to another hospital.

*Call a meeting with all doctors, nurses & immediate hospital staff if you are getting different stories!

* Keep detailed notes! Write everything down. Times, Dates, Names, Remarks, etc. If you can film on your phone do it! If you’re in a State that allows one person consent to record… DO IT!

*There are Patient Advocacy companies that you can call for help if need be.

*There are Patient Advocacy groups that you can reach out to.

*There are Patient First and Patient Safety groups, orgs.

When it comes to your loved one in the care of doctors, nurses and a hospital… be INSPIRED …TO BE PROACTIVE!!!
Until next week….

Friday, October 16, 2015

Who was William aka Thalack to the Gamer, Blog & Transformer Community...William was the strongest person I knew or will ever know!

William was the strongest person I ever knew or will ever know. He fought to live; he loved life & had total belief & faith that he’d make it!
William was from the Omaha Nation - Tapa Clan...he was happy, had a beautiful smile & asked for very little in life. He loved to cook, laugh & had a sense of humor about almost everything. He loved life to the fullest. He loved his family with all his heart without question & gave it unconditionally, but it was his 4 legged girl Mea' who owned his heart. He had good friends who were loyal. He had a good heart, a pure spirit, a kind soul & loved all animals! I don't believe he ever hurt a soul because that was not in his nature. He saw the best in everyone.
‪‪‪‪‪‪‪‪‪‪William was the best son any parent could have been blessed with. We were & still are so very proud of him.
He was a class A computer tech, a published critical review writer, editor, aspiring producer/director, a professional gamer who was a member on one of the top pro teams. AND yes, he was an avid lover of all things Transformers. He loved Transformers from the first cartoon aired to the first transformer figure released. And yes…he was proud to be a nerd! His year was made when he met Frank Welker the voice actor for Megatron & Galvatron at BotCon in IL. He planned his yearly trips to BotCon the day after the last one would end. This year 2015 he had planned to have his transplants and his BIG wish was to jump in the POOl at the 2016 BotCon.
So as you can see, William aka Thalack asked for very little.
< “Autobots ROLL OUT” “All Hail Megatron”

Follow his story as it unfolds. Learn how things went overwhelming wrong at a top hospital with some of the doctors & nurses associated with the hospital.

Saturday, October 10, 2015


*IMO of William aka Thalack - Be INSPIRED, be PROACTIVE & get a second and even a third opinion if something doesn't feel right. If something feels your instinct, trust your gut. Ask QUESTIONS! RESEARCH...RESEACH...RESEARCH! BE INSPIRED.. BE PROACTIVE...BE THE BEST ADVOCATE YOU CAN BE FOR YOUR LOVED ONE!

Words from a grieving mother.