Hi Dear Readers,

This is Christi's mom writing an update on her behalf. My husband and I visited on Wednesday the 29th and were disconcerted to see our listless granddaughter and her hugely swollen abdomen. Her condition did not improve despite various diuretics and so her parents advocated for her transfer to Texas Children's where she would receive more specialized care. This was to take place yesterday, Monday the 3rd. It was a hellish experience complicated by miscommunication, delays, meetings with the patient advocate and other factors I won't mention. One small example for the transfer delay was waiting for the results of an Echocardiogram. Because Anderson could not read the results, they had to be downloaded to CD and sent by courier to Texas Children's Hospital to read and then returned to MD Anderson hospital. In the midst of this, there was a mishap due to construction in the area and power went out at both hospitals. Although generators quickly came on, the process was further delayed.

We arrived @ 7 PM to assist Dennis in clearing the MD Anderson room of possessions while Christi rode with Chloe in the ambulance. Although not crying, Chloe grimaced in pain while being moved from bed to guerney. Upon reaching TCH, instead of being transferred directly to her room as had been planned, she was stopped in the emergency room for admission and surrounded by scores of sick children who visit the emergency room for medical care. Not a good situation for an immune comprised child and her stressed mom. The mix up was due to the delay of transfer and the change from day to night shift who were apparently unaware of her admission and who didn't simply call upstairs where a bed and nursing staff were ready. Chloe's wonderful pediatrician, who has been with her since she was few days old, arrived to assist. After several hours wait in a small room off the emergency lobby, they were taken to their room in the pediatric intensive care unit. Although there is group "bedroom" on that floor with sheets provided on recliners, none were available nor was there either a cot or recliner available in Chloe's bedroom and sleeping on the floor is prohibited. The only choice for C & D were hard chairs.

Christi came to our car for some needed items and related the day's continuously stressful, unexpected developments while eating a salad she had purchased several hours earlier. It was now midnight. Dennis remained with Chloe in the room. As my husband and I drove home, we contemplated that it must be the prayers of so many faithful friends that have given Christi and Dennis the strength to face so many difficulties and so we are most thankful. Why there are such obstacles to overcome and why this innocent child must suffer is beyond our comprehension.

BUT, this morning Christi called with much happier news regarding Chloe. Unlike the past several weeks, she has begun "talking", smiling and resumed the habit of fingers in her mouth so obviously is feeling better. She is now receiving continuous Lasix for the fluid retention and a drip line for breast milk food supply. Christi and Dennis feel as though they have "returned home" in coming back to Texas Children's and even left the room to share lunch together.

Thank you for reading this long update and for your continuing prayers and support. Don't forget to check out the guestbook where you can leave a short message.

Judi Redilla