Where do I begin?
Ashley had a pretty uneventful night last night. She and her daddy went on a long drive and once they got home she was ready for bed. By the time I made it back from the ball game she was fast asleep and actually slept better than she had for the last few nights.
This morning she was awake by 7:30 and asking to be moved into the family room. I thought we were going to be looking at a good day. The weather was supposed to be beautiful and I actually thought she might enjoy spending some time outdoors this afternoon. We drew her blood work and thought it would be a good chance for her to go for a short ride while we took it to the hospital, ran to the bank, and few other errands. Once we got her in the car we noticed how different she looked since yesterday. Something about her just wasn't ok. She was pretty miserable. We chose to skip all the errands and just drop off the blood. We live about 2 miles from the hospital. We didn't make it 5 blocks before the phone was ringing. It was the lab.
Ashley's hemoglobin had dropped to 4.3. 36 hours earlier it had been 13.6. Drastic change!
Calls were being made back and forth between the hospital, the doctor, and the blood bank. We brought Ash home and laid her back in her bed while the details were being worked out. In less than 2 hours we had her admitted to receive two units of blood back to back. Ashley has never required two units of blood outside of surgery. Its never happened.
She's looking pretty rough today. Her vitals are all strong. Its so weird. Perfect blood pressure which I find unbelievable with such a low volume of blood on board. Oxygen sats at 97%. Respirations normal. Heart rate good. Her temperature is a little elevated, but nothing serious...but...its the WAY she looks that has us so concerned. Her bilirubin is at an all time high. Her skin is glowing. When I say that I mean it. Her body is so swollen. Her weight is up by 8lbs. She hurts. She's ok as long as you don't touch her or try and move her. She's been awake and alert. Very opinionated. Fussy.
Something inside of her is wrong, but we don't know what it is. Is it simply explained by using the words "disease progression"? I just don't know. Where is this all heading? Will she rebound? Was all of this response triggered by the line infection? The drugs being used to treat it? The bug thats invaded her blood stream? Its it the fact that her liver just can't keep up anymore with all that its being asked to metabolize? There are a thousand questions and NO answers.
The biggest question I have is this..."What do we do? What are we supposed to do?" Its a question with NO easy answers.
Where is all of her blood going? What is happening to it? Why is it being used up so quickly?
Each of the transfusions take between 3-4 hours. You have to wait 6 hours between each unit. Then you wait an hour or two for observation. Sometime early tomorrow morning we will draw another CBC and decide if she needs more blood. Everyone assumes she will be discharged home tomorrow to continue treatment for this infection and we will keep monitoring her vitals and her blood work while we wait to see what her body will do.
We honestly do not know if or when or how much her liver will recover from whatever is happening inside of her right now.
We are tired, unsure, a little nervous about the immediate future and what it will hold for our daughter, and so much more that I don't even know how to write about. Your prayers are so very appreciated right now. Even after all these years I have not grown accustomed to the rate at which her status can change. Things go from good to bad over night. I find it so very hard to believe that just 12 days ago she was playing at the baseball game while her big brother high fived her tiny hand through the fence as he was on deck. Precious memory...she's got a lot of living left to do...and lot more ball games to cheer at.