Thanks again so much for all of the prayers and encouragement.
Carol, I sent you an e-mail.
My wife transferred to the University of Maryland Medical Center last night. I have found a good place for my daughter and I to stay in the meantime; about
a 20 minute walk from the hospital (I really don't feel like renting a car in Baltimore.) There are plenty of stores and restaurants within walking distance as well. I haven't had much sleep since we got here. We've been to 4 hospitals and 4 hotel rooms in the last week, as well as 2 major time zone lags; finally we are where we need to be. Now we can finally get some time to readjust our body clocks to this time zone and feel somewhat normal again.
I am kind of relieved to be up here and away from the military community. I feel a little more isolated and anonymous now. This makes for more peace and relaxation and a chance to focus more on some alone time with my daughter. I was really becoming frustrated with the excess of phone calls, offerings, questions, and visits; although I know the people meant well.
My wife is still showing signs of encephalopathy. She doesn't even remember being in Hawaii. She thought we came to this hospital to get the transplant today. I don't think she really knows what is going on, nor would she really understand or remember in her current state. It is so hard to see her like this. She is all smiles and so kind & humble to everyone, but at the same time I can tell a big part of her is not quite there right now that I really miss.
They ran a battery of tests on my wife at the last hospital; sono, CT, MRI, bloodwork, and we are still waiting for all of the results. They pretty much re-tested her for everything that she had been tested for in the past, and she is getting and echo-cardiogram and another MRI today. I guess this is the final step the hospital does to make sure she is in suitable condition to get put on the transplant list.
I am still feeling very skeptical about
this transplant doctor saying her liver failure is chronic; during her pregnancy all of her blood work was perfectly normal and with no indications of any elevated liver enzymes. I guess that concern is neither here nor there at this point.
My daughter, on the other hand, is doing great. Shes taking all this traveling and time changes in stride. She turned 5 months young today; it is going by so fast! She finally decided to graduate from tummy time yesterday, as she rolls onto her back immediately now. She's been eating like a horse this past week, although she has learned to take her bottle from me, put it in her mouth and drink it all down on her own with minimal assistance. That helps dad immensely at times when things get busy. She loves to go places. She smiles at everyone who looks her way and just makes life seem so simple and carefree. She has taught me patience and understanding and made me a better person. She is by far my best source of emotional support through this. I am a first time dad, but from the stories I have heard and the books I have read, I think that I am blessed to have such a great baby, and especially at a time like this.
I will update again when I hear from the doctor about
my wife's transplant registration. With her MELD as high as it is, she should be first in line once they get her registered. Lets just pray that they find her in suitable condition for listing.
Thanks again for all of the support.
Post Edited (Brian74) : 1/27/2013 11:03:20 AM (GMT-7)