Quick Stay at the Homefront!

Sorry we haven't been able to update for awhile. Victoria came home for five days but became sick and ended up back in the ICU. Things have been really crazy at the homefront. Our computer has not been working so I couldn't update, but now that we are back in the ICU I again have access to the computer and internet...... It felt sooooo good to be home again with our angel. But she had a fever from the first night she came home. I thought it was just teething but as the week went on she got worse. Her heart rate was really high and she was on around the clock Tylenol and still the fever would not go away. She was unable to sleep for more than an hour at a time so we thought it was just her getting adjusted. We soon learned that was not the case. So the first night we were home, I get a call from her Immunology Doctor telling me that blood work came back indicating that Victoria has an immune deficiency because her T cells are extremely low. They put her on an antibiotic for maintenance called bactrim. This will help her immune system. We are still learning what this will mean for her health, its not really the news we wanted to hear her first night home. Grandma and I have been extremely tired because of being up all night with her taking turns. She just wasn't feeling well. She was acting like her mouth was on fire so I thought of teething. Come to find out that she has a fungus called thrush in her mouth so bad that her tongue turned green. She also got such a bad rash on her face which we also think is a fungus not really sure yet. She became so sick on Saturday night that we were debating to call 911. She had a higher fever and tachycardia and really acting miserable. But we made it until Sunday morning to go to the ER at Miami Childrens. They have run a bunch of tests on her with the suspicion of mono. Now we are just waiting. She has been sedated all day because they gave her a really high dose of chloralhydrate so they could do an echogram of her heart. So for now it is just wait and see. She has not had a fever since 10:30 last night. But something just doesn't sit right with me. Her head has been really swollen and I worry about that too. My mind is really fried right now.. so I should quit babbling .... Stay tuned for Victoria's Journey.. Please keep Victoria in prayer..