Well her oxygen needs continue to increase. She is on it most all of the time. We do remove her for short periods of time. This post will not be long as I don't feel very positive at all. She sounds like she has a really bad respitory infection, but yet this weeks x-ray said clear, last weeks said asthma, pnemonia or bronchitis. It also mentioned enlarged hear, but this weeks didn't mention it. We had appt. with cardiologist and I had place way too much hope that we would get answers. We got absolutely none, I left very weepy. He says she has developed sleep apnea and also aspiration and that is why the x-ray showed what it showed the week before. The doctors are agreeing to leave her on oxygen, but I am so black and white that I want a reason as to why things are changing so much. As to my knowledge we have never had aspiration, but I knew this was a possiblity. We were told when we were in Dallas, during the evacuation about 4 1/2 weeks ago that she was faily enamic and that we needed to address this when we returned home. I told the dr. but I guess the communication had a glich in it and I asked again this week at his office. He was sending us for x-ray, lab and urinalysis. She has been pale and very tired. When I called for the results it show she had probably UTI(after 5 antibiotics) and that he levels were ok concerning anemia. I was confused! Tonight we had to go get Rochephin shot after the pediatrician close and when the doctor review the labs from the hospital this week they were concerned about her levels indicating anemic. They wanted me to address this with follow-up this week. I am totally confused. They commented that several level were off (abnormal). She had had bleeding several nights when she coughs but it resolves quickly. all of this with no answers! Maybe the most frustrated I have been. I really feel like no one wants to find out why she has this drastic change. She is not eating near the amounts orally that she has always eaten and this does scare me. In March when she totally stopped taking liquids orally, she had been slowly decreasing her amounts for seveal months prior. This seems to be happening with her foods that she eats by spoon.
Please pray that if there are answers we can get them. Also that we will get into a pulmonologist soon. I think if I hear it will take months, I will, lets just say not be happy! I have heard of others having some sort of hypertension in their lungs but Annabel has always seems to be ok.
Know that I am so appreciative of all the prayers and phone calls asking about Annabel and if they can do anything. Oh how I am so blessed with beautiful friends. I truly don't deserve it. I have friends in need from storm, or I need to attend funerals, I forget birthdays, and many more than I am not getting acknowledged.
Monday we will drive to Houston for a VCUG, renal ultrasound and to see her urologist. I normally leave this appointment frustrated also. She is basically living on antibiotics and I worry about when she really needs them and she will be resistant from the continued use for UTI's. Will let you know more and I am really thinking that after this shot tonight tomorrow will be bright and cheerful.