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….

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