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TigerLilly

Tuesday the 30th

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Sorry about all of the typos. I had been on my phone. 

Amber came off the ECMO yesterday without any complications. We were down to the wire getting her off. Had about 12 hours left before the ECMO machine would no longer work due to her being off blood thinners. But she is off and stable! Her heart is work almost to full capacity. They feltook confident enough to close her chest. She still has two shunts in her head and is in kidney dialysis and she is still being heavily sedated. The more rest the better. 

Her situation is beyond rare. They have a team of doctors going over her files because this has never happened before. But she is on the mend, she will get better and might even be home sooner than we thought. The Doctors and Devos Children's Hospital are true heroes as far as I am concerned. We will be forever grateful to them. 

Edited by TigerLilly

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TL - just reading this today - sorry for Amber and your family, but so glad that things are looking up!  Prayers sent.

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Happy to hear your niece is on the mend. What a frightening thing to happen.

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Amber got to wake up for a short time yesterday. She is doing better, still on dialysis but no new complications. This still do not know if she has any brain damage yet. She went back to sleep shortly after they woke her up. 

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I feel like she is going to be ok. Her heart never stopped beating so she was never without oxygen. It was just very close to stopping. The brain bleeds were on the outside of the of the dura and caught very quickly thanks to those doctors. She is going to be very confused and will likely seem a little disconnected. Told my brother not to be alarmed if she was a little out of it at first. 

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TL,   Good to hear that your niece is on the mend.   Difficult when someone you care about is sick, & you can't do anything to help them, but just be there.   Best Wishes. PD

 

 

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11 hours ago, horsecrazybvh said:

Hoping that Amber has continued to improve the last couple of days! Sending good thoughts your way. 

She is improving. I seen her last Sunday and as of right now she is in speech and occupational therapy. She only has a few words she can communicate but she understands everything just fine. Her short term memory is slowly getting better. Yesterday she added a new word to her vocabulary when the nurse came in to give an injection. I won't repeat it. She has not been told all of the details of what happened because she will forget shortly after telling her. 

But none of this is due to brain damage. Her lack of vocabulary and short term memory issues are all from being in a medically induced coma for so long. It's hard on a body. 

She is still combative from time to time. Confusion and being on steroids can do that. 

Doctors are very much pleased with her progress. She is still on kidney dialysis as of right now. 

Her cardiologist has been going over things with my brother and sister-in-law. He feels like her condition should not have been handed the way it was when she was still here. Between seeing her pediatrician multiple times, urgent care twice and the ER actually causing her heart attack, he feels all three failed her. She should have been sent to a children's hospital  sooner than she was. 

However, because of how fatal her condition was and how often this condition is mismanaged I really think her having the heart attack brought on by the morphine saved her as odd as it sounds. If she had not had that heart attack her other organs would have continued to quietly fail her while local doctors avoided even looking to check her other organs. They did a simple mononucleosis test that was negative and kept saying there was nothing wrong with her. 

Edited by TigerLilly

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Here is my complaint. I feel like the blood tests many doctors offices and hospitals are using are unreliable. What is the point in using these tests when they have been proven time and time again to be so inaccurate. They have much more reliable tests for illnesses. Why waste time, money and risk the health of people using tests that are no good?

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    There might be places that don't do accurate blood tests, but we don't ever know know until after the fact. My wife had a ton of blood tests, in the past 6-8 months, I think in her case they have been reliable in knowing just how body, is responding to her cancer treatment.  Maybe we have been very lucky, but we've never had reason to question them.   PD

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58 minutes ago, TigerLilly said:

Yesterday she added a new word to her vocabulary when the nurse came in to give an injection. I won't repeat it. 

 

I'm glad Amber hasn't forgotten her "best words." LOL

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It sounds like Amber is improving and that is fantastic to hear.

My mother was sent to the ER when her Dr office pulled blood and said her potassium numbers were too high.  They get to the ER where they pull blood .... only to find her potassium numbers were fine.  Obviously someone did/read something incorrectly with that first test. 

I often wonder if some of these medical decisions (which tests to run) come down to cost/profit/loss.  That may be good for the hospital's bottom line but it certainly doesn't help the patient.

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We all have to be our own health advocates when it come to doctors and the hospital - you have to ask a thousand questions and sometimes be pushy to find out what you need to know to make a good decision or to confirm that results are correct.  If you are unable to do it yourself, you need to have a family member or friend who will help you through it.  It's like speaking a foreign language with no confidence that what you are being told in that language is right. 


Glad Amber is getting better, hope your family can find the support you need to help her recover. 

 

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20 hours ago, Magic26 said:

We all have to be our own health advocates when it come to doctors and the hospital - you have to ask a thousand questions and sometimes be pushy to find out what you need to know to make a good decision or to confirm that results are correct.  If you are unable to do it yourself, you need to have a family member or friend who will help you through it.  It's like speaking a foreign language with no confidence that what you are being told in that language is right. 


Glad Amber is getting better, hope your family can find the support you need to help her recover. 

 

Yes and Google played a big role in helping my brother make a quick decision to be assertive with the doctor. When Amber started having chest pains after the morphine the nurse told my brother it was normal for kids to have chest pains when they get morphine. Brother gets on the Internet and finds all of the complications of morphine. First one was heart attack. He yelled for the doctor to get back in the room. Sure enough, she was having a heart attack. 

But good news today. Amber is out of the CCU and will be heading to Mary Freebed rehab center for inpatient rehab very soon. Her doctors are astonished with how well she is recovering. 

They are still waiting on some genetic testing results to come back on the HLH to see if she what type of other treatments she still needs to manage the condition. 

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        One who has lost over 85% of the function of his/her kidneys is diagnosed to have end stage kidney failure. At this stage patient cannot lead a comfortable life with medications alone ; the patient should undergo kidney transplantation surgery , if he/she is medically fit for the procedure.
        The donor can be either a living person or a person who has had a brain death.  The living donor has to be a healthy person above the age of 18 years and below 60 years, and should have two normally functioning kidneys ; he/she should not have any medical illness which makes him/her a high risk for anaesthesia and surgery. The medical fitness for kidney donation can be find out after a detailed medical evaluation.
      For more information refer Kidney Donation.This will be very helpful.

Edited by jamesannie

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4 hours ago, jamesannie said:

        One who has lost over 85% of the function of his/her kidneys is diagnosed to have end stage kidney failure. At this stage patient cannot lead a comfortable life with medications alone ; the patient should undergo kidney transplantation surgery , if he/she is medically fit for the procedure.
        The donor can be either a living person or a person who has had a brain death.  The living donor has to be a healthy person above the age of 18 years and below 60 years, and should have two normally functioning kidneys ; he/she should not have any medical illness which makes him/her a high risk for anaesthesia and surgery. The medical fitness for kidney donation can be find out after a detailed medical evaluation.
      For more information refer Kidney Donation.This will be very helpful.

Ambers Kidneys are back to work. They just took their sweet time. A few weeks ago she developed an infection in her skull. They noticed it at a check up. She ended up needing to have a portion of her skull removed and in a few weeks will have a plastic plate put in. The said the infwction nosocomial or hospital acquired. Caused by a bacteria found in human digestive tract. Thought it best to not try and clean the bone, just replace it.

 She is still having some short term memory issues but they do not think a reaction to an illness like this will happen again. They said it's a fluke. Recovery will take a year at least. 

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2 hours ago, Heidi n Q said:

Wow, what a wringer she's been through.  

Yeah it been tough. She can't go to school so now she has to home school. Her mood is terrible, she has horrible anxiety and she is very depressed. She has a port right now and has to keep it covered. Everything is starting to get to her. 

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TL, is this temporary or permanent?  Really doesn't matter, though.  As she is going through it, the immediacy of her situation can be overwhelming and she may not be able to look past everything that is piling on her to see the end result and freedom.

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