Monday, July 27, 2009 10:34 PM, CDT
Day 305
Today has been a quieter day. She had a pretty good night, DJ stayed with her and I actually slept very well in the parent room. Thank God! She bled a little more from her neck last night but has not bled at ALL today! Thank God! Our problem of the day was her blood pressure. We tried all night and most of the morning to get it down with the three regular bp meds she takes and nothing worked, so they put her on a drip of Nicardipine. It seems to be working I just wish we knew why her bp was so high and could fix the problem. Her breathing has been ok and the amount of fluid coming out of her belly is less. Her belly measurements have gone from 65 cm to 56cm. Her liver is still very large but I am very happy to say her bilirubin went down again to 6.8. Thank you, Jesus! So, Dr. Leung is back in the country and saw her today for the first time. Every time she has a major problem he is out of the country, he said he is going to Paris in Sept. and she is going with him, that is the best plan I've heard in months! Anyway, Dr. Sara has kept daily contact with him and together they have a plan. We will wait a couple more days and see how she does. The next step for treatment will be chemotheray and/or radiation. Radiation for the whole brain which would come with alot of risks. She has been to critical to do this treatment and she still has not woken up yet. They believe the Rituximab has definitely worked and it along with the Hydroxyurea may be enough but only time and God will tell. Our biggest concern right now is the lesions in her head and whatever else they are causing. It's hard to treat the brain but it CAN be done! We just need Elizabeth to stay strong and keep fighting! I PRAY that God will show us the way and Elizabeth will not have to have any further harm to her body. I thank Him for getting us through another day and for all the caring people she has taking care of her. Pray tonight for her brain to heal and that she wakes up in the morning. At 9:30am tomorrow will be 3 days, 72hours since she was extubated. Remember all the children who are suffering and their parents. Goodnight Keep Praying Keep Believing Love, Michelle
http://www.caringbridge.org/visit/elizabethdunford
