Wow. I had no clue that there were others out there! Your story is EXACTLY like ours. In 2009 Our 15 month old daughter had been sick. We thought it was just your typical virus that she could have contracted from our other two school age-children or from a child from church. But after a week, still the same. Nothing we did worked. My wife too really paid attention to her color as well. She's already pale with blonde hair and blue eyes, but she had noticed the dark circles under her eyes, and the purple lips. She had also become very non-active and lethargic at times even sleeping almost 10 hours a night. We had scheduled an appointment with our PED the next day, but then my wife had become sick, so she asked me to take our daughter to the doctor that afternoon. Once we arrived and they did their typical check up/vitals/stats, and she suddenly jumped up and left the room. She then returned with half of her staff, and they immediately had me administered oxygen. One nurse looked at me with fright on her face and said "You have 15 seconds to decide what to do with your daughter. Either I call to air lift her to Gainesville, or we send her to the local ER and an Ambulance from St. Petersburg All Children’s will come get her." Having just moved to Tampa area from St. Louis, Mo I blurted out "All Children’s!" I asked what in the world was going on, the doctor looked at me, and said "In all my years of profession, I don't exactly know what's going on, but I will tell you, she’s dehydrated, I have detected a heart murmur, her body is not oxygenating, her CBC is below a 4, and she is beyond the capability of this office. We will do everything we can until the ambulance arrives." One nurse asked for my car keys, and she said she would go out to our vehicle and get her car seat for us because the ambulance would put her on the stretcher in her car seat. I then called my wife, and tried my best to explain everything and told her to get here as quick as possible. The ambulance would only wait for her for 10 min. My in-laws were at my house and the time so my father in-law drove my wife, as my mother in-law stayed with the other children. When we arrived at the local ER, we still had no clue as to what was going on. They were having trouble starting and i.v. Not only was she only 15 months old, her veins were collapsing. They were even looking to try on her feet or her groin. THANK GOD, the All Children’s ambulance crew arrived and she walked up and in one shot got the vein. It took a little while to get transferred to All Children's because her organs where starting to fail. To shorten the story we spent two nights in the ICU, received two transfusions and she received multiple tests, including the spinal bone marrow biopsy which made my wife almost pass out and she had to leave the room. We too thought we were looking at leukemia. After the second day, the Oncologist ruled that out. On the third day we were starting to see improvement. Her vitals were looking good. Her fever was gone. And the urologist said her kidneys were working properly again! They then moved us out of the ICU into a normal room. But there was still no clear answer as to what was going on. That is when the Hematologist Finally told us we were looking at TEC. The Hematologist looked me right in the face and said “I don’t know who you are, or what you believe, but I can tell your people of faith, so who ever you believe in, you better thank them because 48 hours ago, you would have put your daughter to bed and she would have died in her sleep” Before it was all said and done, she had to have one more transfusion. And they let us go home. We had to have two more weekly visits before she was officially released. She was put on a few different medications; the worst was the iron drops. That junk just smelled just plain nasty, and of course she fought us on taking it, but after that bottle was done, she didn’t have to do it any more. But they told us to always be on the look-out for these symptoms, and she should out grow it by the age of three. She is now 6 years old, and havn't had any trouble since. She's half way through her kindergarten year, and every night when we put her to bed, we thank God she is still here!
post #21 of 23
12/17/13 at 1:49pm