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TigerLilly

Tuesday the 30th

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I wished I had better news to start the day:( My 16 year old niece has been hospitalized. She was in the ER last night at the local hosputal and they transferred her to the ICU at Devos children's hospital. She had what I thought was a simple cold over the weekend. Now she has myocarditis. She is in so much pain and they can't give her any pain meds because it brings her BP down to low. They are still trying to figure out what caused it. Should know later today. 

This poor girl has had a rough couple of years. 

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TL,

      I wish your niece & her family & the  Very Best, 16 is so young for major health problems:angel3::angel3:. Do up things can go up from here. Best Wishes. PD

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I think this is something caused by a virus but her mother's family has horrible heart issues. Her Aunt died at 35 just a few years ago of hearth failure, same with her grandfather and my younger niece "full sister" has a hole in her heart that has to be monitored.  So if they were to find some defect I would not be surprised but I am very scared for her. 

Edited by TigerLilly

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We personally know three people who had viruses that the Doc's couldn't figure out what they were or how they got them.  Luckily all three were treated.

The bugs that are out there are very scary.

Edited by RailroadWoman

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Im at the hospital. She took a bad turn last night. A machine is pumping her blood because her heart needs to rest. They do think she has an underlying heart condition. I fel like i am living in some other reality right now. 

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TL, I hope she recovers. The advances in medicine are simply amazing. Hopefully giving her heart a rest will really help it fight off whatever it is that is making her sick. It was always so difficult to watch anyone, but especially young kids come into the ICU. We had one gal who wasn't even 18 have a baby and go into heart failure. She got moved to my ICU and thank goodness recovered. Sending good thoughts her way! 

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We are driving back to pick up my aunt. She is in no condition to drive. Ambers kidneys have stopped working and she is on dialysis. 

Edited by TigerLilly

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TL,   Sending good thoughts & prayers for your niece.:angel3::angel3:      Always hard to see young people, with sever health problems. Best Wishes. PD

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Thank you PD. I talked to my brother this morning. Things are looking up! Her numbers are steadily improving while on the ECMO. But she is still on kidney dialysis because her kidneys are not responding well to the ECMO. We are looking at anywhere between 4 and 30 Days on the ECMO, which means she would need to be in a medically induced coma during that time. He brain function is normal. Now they are thinking it's Multiple Autoimmune Syndrome. Possibly Lupus along with two other AI diseases. 

Sorry, I just need to vent on here. I am trying to be strong for my brother and sister-in-law. But honestly I am coming undone. I am much more optimistic as of last night and this morning. 

Edited by TigerLilly

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TL,   You can vent all you want, but I'm glad there are signs of improvement, the fact that she is young, should help fit back to a more life, but no doubt this will take time, & constantly test a persons patience, while they wait & watch.  Best Wishes. PD

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i'm so sorry, TL. I hope they can get some definitive answers soon. Not knowing makes it worse.

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I got a hotel room anout 12 miles away because everything thing was booked in Grand Rapids. The surgery went well and because she was so closely monitored the bleed only went unchecked for about 3 hours. But it is another setback. They said the bleed was caused by 2 things. He need to be on blood thinners and the pH of her blood getting to low. 

Edited by TigerLilly

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TL,   Sending good thoughts your way,  :angel3::angel3:  glad doctors are now top of things.  Best Wishes.   PD

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Sheis more stable this morning. Her heart beat for 45 seconds while they switched ECMO machines but it is still weak. They have determined that she has a combination of things going on. She has HLH and she got Mono at some point. They had to cut her hair off for the surgery and she is going to be very unhappy about that when she wakes up. But she will wake up. 

FB_IMG_1496590905478.jpg

Edited by TigerLilly

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Pretty girl, pretty hair. But it will grow back. I hope she has a fast recovery. She has a lot of life to live.

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TL,  Amber is a pretty girl,  I can understand she won't like having her hair cut off for surgery, but it is small price to pay, for a complete recovery. Again I wish her well.  PD

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My brother said she has done well all day. Still just resting. Her viral load is down from 25,000 to 1600. In a day or so it should be virtually gone. Now we are starting to focus on her heart and what to do next. She is beating this! Thank you all so much for your kind words and support and just letting me get all of this out of my head. 

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She had another brain bleed this morning. Same spot but they got it under control. She is still in surgery. Just finishing up. 

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They took her off the heparin but she is still on the machine. She did very well overnight. Last we knew her heart was capable of working at 80% as of yesterday but they put her back on the machine to let it rest. But since she is off the heparin she has to start coming off the ECMO because she could for blood clots. So noon today they are going to try and switch her over slowly to get her heart pumping. Its a Very delicate process. We no longer have a transplant option so this has to work. But i feel very optimist that this will work out today. Her heart seems like it wants to get back to work. 

Edited by TigerLilly

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