July 8, 2009
Chloe hasn't had a great two days. She had shown signs of distress and a urinary tract infection was discovered this afternoon. She has had some blood in her stool and that led to some concerns about possible intestinal perforation or ulcer. Tonight another xray was done and it is believed that she also has an infection in the intestine someplace, but no perforations were discovered so she is now once again getting a triple concoction of antibiotics, in the hopes that this will deal with any infections. This came on the heels of the news that docs have decided that the breathing problem that was ruled out last week that would have required heart surgery, will be necessary after all. The pulmonology docs have not been able to get a grip on what to do and now it is back to the heart. The roller coaster rolls on. This has become almost unbearable as nothing ever seems to get resolved before Chloe gets hit with the next thing. The heart surgery would have been early next week, now...not until there is NO sign of infection, that is a risk not worth taking.
I am truly beside myself for many reasons tonight, on so many levels. One is maybe that it is 1:30 in the morning but that would be the least. It is very frustrating here, mainly because the docs cannot figure out little Chloe. Her issues are so severe and unique and no one has a tried and true plan or even an agreement made about what is wrong with her. I realize that I am just a regular plain Jane, and really know no one of consequence who can help me spread the word about Chloe. Her parents would like to get her story out worldwide in order to maybe find a doctor who for some remarkable reason would have an inside track on how to proceed. We like the doctors at Children's, we just want what is best and we can't hardly think straight enough anymore to know that good decisions are being made on our part. This is my plea to all members of this group. If you know someone, or know someone that knows someone, who you feel is a connection to a news source, local, national, globally. PLEASE help us! We could use newspaper, magazine, tv or internet coverage. We just need help. I am out of time and just about energy and feel like I am spinning my wheels. I am feeling useless and used up and need all of you to lift my spirits and provide the energy that has given me hope since the beginning of this blog. News stations around here do not find this story interesting enough and I am very, very discouraged. I try to be real here. This is my real tonight. I am scared, discouraged, a little depressed and that is just speaking for myself. My daughter did not do so great throughout this day either. It is hard, hard, hard.
Tonight I pray for the goodness of others to see me through, for the Holy Spirit to speak my prayers for me, as I am just wordless when it comes to the prayers. I remain thankful for all that I can, there are good things, I see them. Some of my own deficits are just becoming more apparent. Please contact me if you can direct me to someone who can help. Love to you all, thanks for hanging in there with us. Love and blessings, Nancy