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Toxic Hepatitis? Becoming desperate for answers

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Posted 1/14/2013 10:22 AM (GMT 0)
Can they really take your job away from you given that they have full knowledge of the situation you and your family are in? I don't know anything about this but I think you could look into the specific employment laws that are relevant to you, your job and your situation. Would it be worth seeking some legal advice about your employment before making the decision on what state you feel is best for your wife's treatment?
Posted 1/14/2013 11:29 AM (GMT 0)

Worriedneedhelp said...
Can they really take your job away from you given that they have full knowledge of the situation you and your family are in? I don't know anything about this but I think you could look into the specific employment laws that are relevant to you, your job and your situation. Would it be worth seeking some legal advice about your employment before making the decision on what state you feel is best for your wife's treatment?

Its not that they take my job away, its the fact that every 6 years I must compete in a promotion board against my peers. Promotion boards are normal for most military careers. If I miss some critical training or qualifications, then I am not able to progress in my career at a rate consistent with my peers and remain competitive. The promotion boards have become very competitive in the last couple of years, due to the cutbacks in the defense budget. It used to be that one could get promoted in my field by simply having a pulse.
Posted 1/14/2013 4:40 PM (GMT 0)

Brian,

Have they tested your wife for CMV (cytomegalovirus) or EBV (Eppstein-Barr Virus)?  Both of these can cause jaundice and liver issues.  Treatment is much different than with the autoimmune disease possibilities so she wouldn't need the pred.

Posted 1/15/2013 12:38 AM (GMT 0)
Army medicine is getting involved now. Last word is that we are now going to be med evac'ed out of Korea and straight to one of 3 US Army hospitals for further evaluation by an Army internal medicine team to determine what the next course of action should be. I guess this could either be good or bad. It sounds like they want to confirm the findings of the Korean doctors before moving ahead.
Posted 1/15/2013 4:02 AM (GMT 0)
I think that's good! Hopefully, it will be a doctor you can understand!

Hugs,
Connie
Posted 1/15/2013 4:22 AM (GMT 0)
Brian,

You must be so relieved.

Will you go stateside for consultation and then have to go back to clear quarters, etc.?

Having been a military wife (a long time ago--pre-Mike) I know there are mountains to climb sometimes.

Have you family support statesde?

Wishing you all the best

Carol
Posted 1/15/2013 9:36 AM (GMT 0)
My caseworker went and pulled my wife's entire hospital record today, and based on their findings it appears they want to act quickly. I haven't gotten the conformation call yet, but it looks like they intend to evacuate her to Walter Reed Army Medical Center in Washington DC via military medical flight. I am assuming I will probably out-process here first and then bring our daughter there shortly after, but I am not yet sure how this whole procedure works.

They will be reassigning me to a different skill within my field over there, so I can stay over there as long as it takes for her to recover. It is a relief that the Army intends to handle everything from this point. It was getting exhausting trying to play the middle man in all of this.
Posted 1/15/2013 11:39 PM (GMT 0)
Brian, that is wonderful news! I know how relieved you must be. Less stress is always a good thing.

Hugs,
Connie
Posted 1/16/2013 1:41 AM (GMT 0)
 Good to know you guys got the attention you needed , Keep us posted .

 A. Ziffle

Posted 1/16/2013 12:53 PM (GMT 0)
I guess all of the facts are in place as of today and the medical records have all been scrubbed. All of my paperwork has been submitted, and I am now waiting for the command and med team to have a meeting tomorrow and discuss all of the details. They almost screwed up and were going to send us to Washington, as in a hospital near Seattle. We straightened that out REAL quick.

I spoke to the air evac. lady today. The plan is to fly me, my wife, and our baby out to D.C. very soon on a medical evacuation flight. (Tricare Std. will cover all of it since I am already over my $1000 catastrophic copay cap for the year.) We will set my wife up in Walter Reed, and then they will fly me and my daughter back here commercially so I can get everything finalized and out-processed. We will then fly back to D.C. My new duty station for the next 3 years will be about 30 miles away from the hospital.

My wife seems much happier hearing that she will be getting better care soon.

I will update when they let us know the final word. Thanks so much for the support so far.
Posted 1/16/2013 1:41 PM (GMT 0)
Brian, Wow, they have moved fast.

That particular duty station should be a wonderful experience for your family.

There is a lot to do in and near Washington....if you don't mind the traffic.

Once she feels better...but for your child anyway.

Best to you all. Glad youa re going to with her getting over here.

Carol
Posted 1/19/2013 3:31 PM (GMT 0)
Well, not so good news. Wife's INR kept going up and they also mentioned ammonia. She vomits anything she tries to eat. INR was up in the 4's today. I notice she seemed a little different and not so much her self the last few days and I was questioning initial stages of encephalopathy. A US doc visited her last night but was convinced she was fine. We got on the plane today for D.C. and she was still out of it, but coherent. She told me not to worry when tears were welling up in my eyes in the ambulance. We got on the plane. She wanted to see our daughter, but we were getting ready to take off. Shortly after I brought our daughter over, but she was in obvious pain and waved us off.

about 4 hours into the plane ride, everything changed. She became very uncomfortable and jerky. Kept vomiting. Didn't fill the catheter bag a drop. Kept trying to sit up, ignoring the requests of the doctors. They eventually had to strap her to the bed. Her blood pressure was also extremely low. They decided to stop in Hawaii to try and stabilize her for a day before continuing to D.C. The last hour of the flight was the worst. She began wailing randomly, but not in pain type wailing. (She had our daughter naturally and never made a single sound through the labor.) She also became completely incoherent. Her legs and arms began twitching and her mouth was making these erratic random puckering motions. She wouldn't respond to me; just sorta looked right through me, like she didn't recognize me. That was the most painful feeling, like she wasn't there anymore.

We're at Tripler in Hawaii now. She was in a bed there in Primary Care still incoherent and twitching. I just about lost it right there when I saw that she was still like that, but I had my daughter strapped to me and a room full of docs, prodding me with questions. Something tells me they need to figure out something really quickly. I really don't know how to handle this.

They agree with me on the encephalopathy, but they are also concerned about the low blood pressure. They are talking optimistically but they don't sound optimistic. I am supposed to get some rest so I can take care of our baby tomorrow, but I cant sleep and am in a completely reverse time zone. I am angry and sad and confused at the same time.
Posted 1/19/2013 3:53 PM (GMT 0)
Brian,

This is dreadful.

High ammonia and being out of it...many have seen that.

Erratic blood pressure...many have seen that.

Kidney disfuction...many have acute kidney failure during the advanced stages of liver disease.  Mike was hospitalized four times for that and they got him turned around.

But the twitching...that is new to me.  Being in a coma like state thought...many have seen that one als...o with the high toxins.

I didn't realize your child was a baby.  This is a difficult time for you all.

In a way I'm glad you are in Hawaii...taking a break on the ground where they can get specialists from the Island to her bedside quickly...rather with an in air emergency and no CODE to call.

I'm sure you are exhaused, spent, emotionally drained.  But thorugh it all, you have a baby and need to be there for her.

Hugs,

Carol

Posted 1/19/2013 7:49 PM (GMT 0)
Brian, how truly awful! I hope and pray they can stabilize her in Hawaii. The low BP and kidney dysfunction is more concerning than the HE.

What makes your wife's case so difficult is that there is no diagnosis...no idea of what caused all this. I do tend to think that it may be an autoimmune disease, since there is often a big flare after giving birth. Many that fall into this category are told not to get pregnant.

At this point, you just have to take it moment by moment.

Know that we are here for you and that there is hope.

Hugs,
Connie
Posted 1/20/2013 2:02 AM (GMT 0)
Brian,
Oh my gosh...Here's hoping this gets handled quickly for you, she and your baby. Will be thinking of you all and will light candles to help you see some light in all this darkness.
Our thoughts are with you and your family.
Angie1953
Posted 1/20/2013 4:23 AM (GMT 0)
Prayers for you and your wife and your daughter!!

Sandia
Posted 1/20/2013 8:12 AM (GMT 0)
INR is at 9, MELD is 37. Liver is shutting down. She was incoherent the whole time I was there. They moved her to ICU. D.C. is out of the question now. Doc said the best case scenario is that they can stabilize her enough to go to a transplant facility here. She also told me to prepare for the worst. I don't even know how to prepare. I honestly don't know what to do. I just keep trying not to think about it.
Posted 1/20/2013 11:00 AM (GMT 0)
Prayers for you and yours Brian, try to stay strong if you can. Daughter will be needing you to hold it together...is it possible for someone in the family to fly there asap to help you? You really need to have someone else with you to help with daughter and to just be there for you.

Godspeed

hugs Mae

Post Edited (Germophobe) : 1/20/2013 4:36:19 AM (GMT-7)

Posted 1/20/2013 1:36 PM (GMT 0)
 Brian , My thought's are with you and your family .

A. Ziffle

Posted 1/20/2013 1:49 PM (GMT 0)
Brian

Is the military setting things up for you in HawaiI so you cam look after all this and the baby? Hawaii is mostly Navy.

Best

Carol
Posted 1/20/2013 10:06 PM (GMT 0)
Brian, pray. That's really all you (and we) can do right now. Mae's suggestion is a good one. You need someone to be there for you and your daughter.

Hugs,
Connie
Posted 1/21/2013 2:41 AM (GMT 0)
Brian,
My thoughts are with you and your family. I do hope things turn around for the best. I was sad to see your post.

Hugs,
Posted 1/21/2013 3:32 AM (GMT 0)
My thoughts are with you Brian. Stay strong.
Posted 1/21/2013 5:26 AM (GMT 0)
Praying Brian praying...
Posted 1/21/2013 8:28 AM (GMT 0)
Stayed in the hospital all night last night. Wife remained incoherent. Blood pressure did stabilize and INR dropped back down to 7's due to transfusions. Doc sounded suddenly more hopeful than she did earlier. Hospital staff was excellent; they offered to look after my little one for me and even made up a vacant room for both of us to sleep in, which we did.

Was woken up early by a nurse; they wanted me to see the docs during their rounds. Doc said her blood pressure remained normal through the night, and the plan was to intubate her and get her over to the transplant hospital, which they did. They also did a CT on her brain to rule out any brain hemorrhaging. Much to my relief, CT came out normal. In the meantime I left my daughter with one of the nurses and went to rent a car.

Its kind of hard for me to leave my daughter with strangers. I am in sync with that kid and over the last couple months we've developed an immense bond. I just know how exactly to go about taking care of her and for some reason I get uneasy watching someone else trying to do any of it. I never realized what a gift it is to see your child grow each day. My daughter has kept me sane more than anything else.

I got the car, picked up my daughter, and took her to babies r us to get my mind off things and buy some much needed items. I spoiled her with a few toys as well. Its nice shopping at a real US store for a change.

I was getting uneasy because I hadn't heard from the Queen's hospital yet. I called them when I got back to the hotel. Several doctors returned my call afterwards. These doc's gave me an entirely different story. They agree that her low blood pressure must have been due to some internal bleeding, yet it has miraculously stabilized. They are also planning an MRI on her liver to see if they can pinpoint anything else.

The doctors were all very adamant that they speak with me in person and answer any questions I had, and that I felt comfortable with the Hospital. I was told that since her blood pressure is stable again, they intend to look into the cause, perform a transfusion, further stabilize her, and get her on a plane to DC once again. They seem to be really confident, which is the first real confidence I have heard from a doc so far. I guess we will see how it goes. Im at the mercy of the circumstances and docs, and Ive seen both of those change many times so far. I don't want to get all excited or have any expectations; really just trying to focus on the little one and taking care of us right now. That's what my wife would want us to do. A lot of people have been praying for us, so hopefully that has been working.

Thanks everyone for your kind words and support so far.

Brian

Post Edited (Brian74) : 1/21/2013 1:34:08 AM (GMT-7)

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