Toxic Hepatitis? Becoming desperate for answers

Brian, Ziffle said it all....we are the cheering squad! Safe journies. How old is your little one?

Hugs to all 3 of you,

Carol

Carol, Brian's daughter is only about 5 mos. old, born last Aug.

Brian, thanks for the update. So glad to hear that her BP has stabilized. It sounds like she is getting superb care. Here's hoping that she can go on to D.C. soon.

Normally, we start a new thread when the first one reaches 4 pages, but in this case I'm going to leave it open awhile longer.

Hugs,
Connie

Thank you all so much.

Don't have a lot to say tonight. Nothing much has changed. Some local Army people brought me lunch, and some other Army people brought me dinner. Everyone was really cordial and wanted to make sure I didn't need anything else. I like all the people from different places trying to support me, although its almost exhausting answering all the same questions over and over again, and the phone constantly ringing. Impossible to catch a nap now during my baby's naps. I think there is a such thing as too much support.

I went to the hospital and spoke with the transplant coordinator and filled out the paperwork. They will list her here in Hawaii just in case. I saw my wife briefly, but she is still on a respirator and heavily sedated. The docs say she has been responding today with head nods and such. I guess they cancelled the MRI, but did a bunch more other tests and will know more maybe tomorrow.

I am tired; hospital lady called me really early this morning asking about my insurance & by the time I was able to fall back asleep, my daughter woke up. We're both still trying to get used to the crazy time difference from Korea.

Brian, I found it helpful to do conference calls with 3 or 4 ppl, instead of repeating myself to each, and also used email for updates....just a thought

still praying too :)
Mae

When my grandma was sick and in the hospital down at Mayo in Rochester, MN, my mom would update the voicemail and not answer the phone. This way people could listen to the message and get a quick update of how she was doing. Obviously with the caller ID my mom was able to answer the phone to people she needed to talk to, but everyone else in the family was able to get an update without my mom or grandpa going through it over and over.

My prayers are with you and your family,
Sean

Well, today was better. I discovered the "do not disturb" feature on my iPhone and activated it at night unless its a call from the hospital. I have also told a few other key people that I write about her current condition here in this forum.

I went and saw my wife today, and she is coherent once again, thank God. She is still on the respirator. Her eyes looked horrible and strange today, like a zombie's; I didn't even want to ask why. I was able to talk to her for a little bit, and she acknowledged with nods, and also got to see her daughter. I told her she was gonna be ok, and that I loved her, and she nodded. She made me a kissing motion with her lips, and I kissed her forehead. I so want to tell these nurses the kind of things she would say if she could talk, the kind of personality they are missing out on because she is sick. I know she has already cheated death a time or two already (car accidents, undiagnosed achalasia). I try to think I am strong through all of this, but she is far stronger than me, and she always has been. I cant count number of times in the past when she was the one telling me to be positive, and to just believe her words if I couldn't believe my own. Today she told me she plans to make it through this, without having to even say anything. I believe that far more than anything the docs tell me.

The nurse kept checking to see if she could wiggle her toes and fingers on each side. I am kind of concerned about the reasoning for that and will add that to my list of questions for the doc. They had clearly told me before that her brain was still normal and that all the previous issues were from the encephalopathy.

They say she has pneumonia; but it isn't too bad. They are going to keep her on the respirator as an added precaution, as well as sedation. They plan to fly us out on Thursday for D.C. I am going to make absolutely sure that the Airlift Coordinator has the crew plan the flight route over an area in close proximity of a supporting hospital once we cross over the mainland, in case we encounter problems again.

I am not sure what to think of this hospital at this point. I got kind of an eerie feeling because some of them keep bringing up insurance, and another one of them called me today and insisted that I buy an extra insurance policy from another company, through them. She found my ugly side immediately. I hope these people aren't trying to hurry and get her out of there just out the motive of thinking we cant pay for their services with my Tricare policy. I am just finding it very difficult to trust hospitals these days.

I am concerned that they plan to send her right out of this hospital and straight to the next Air Evac. Tripler specializes in this sort of thing. To be safe, I called Tripler ICU and told to the shift doc my concerns and she gave me the contact info for the doc that will be on the flight with my wife on Thursday. I will call him tomorrow and hopefully he will give me a warm fuzzy feeling. I so want to just get her safely to Walter Reed.

I went to the Navy Exchange afterwards and completed my shopping list. I should now have enough of everything I will need to be fully self-sufficient with my baby for at least the first 3 or 4 weeks after we get to DC.

Wow you are on top of things Brian.. will continue to pray.. yes the vultures swirl around a person..hang in there..

SAndia

Thanks for the update, Brian.  It does sound like you are pulling everything together and taking care of the baby so I think you're probably stronger than you think.  I'm happy to hear the positivity and hope your wife's trip to DC is much more smooth than the trip to Hawaii. 

Sending more positive thoughts your way