Ashley's Story

She will leave fingerprints all over your heart

8/16/2011

I just don't know

Morning labs are back and we don't have much news to "write home about". Things are getting a little more out of whack every day. Originally when arranging by phone with her physician this admission we both agreed that we were NOT looking for anyone to "fix" Ashley Kate. We simply needed some platelets. A little fine tuning. That's all we were looking for. So...

I just don't know... I mean, her platelet level came up to 14 this morning. Not much to celebrate, but still an improvement. Is it enough to take her home with? Well, its not as much as she came here with so she still needs an infusion, but they don't have any. No one really knows when they will get a match and no one understands why her body destroyed the ones we gave her on Sunday, but it did and so giving her the other half of that pack may cause problems for her in the future. I've never seen this happen before. I've never heard of it happening before. Its just a mess. The blood bank is still working to get a match for her. We all had hoped and prayed that her body would just begin recovering and making her own. I guess it made about 25oo. Did I ever tell you how many she is supposed to have? I can't remember but it in the range of 140-450 thousand. So when I say she has 14 this morning it actually means she has 14,000. Its just easier to talk in numbers like 11, 13, 14, 50, etc. I wanted to clarify that she does have more than 11 or 14 platelets. It was 11,500 that went up to 14, 000 this morning. Most of you probably knew that already, but in case you aren't familiar with the medical jargon concerning platelet counts I wanted to clarify.

In other areas of her lab work the WBC is better which says to us "the infection is getting "better". Her bilirubin is up. WAY up. From 1.5 to 17.6. Normal range is under 1. This tells us how her liver is processing this infection and the antibiotics. Not good is what its saying to us. Although she is still swollen and 3rd spacing she is very dry intra-vascularly. Her BUN has climbed to 56. Her creatinine is up as well. This tells us how her kidneys are functioning. So...again we all say no one is here to "fix" Ash and "balance her budget" or her lab sheet so to speak. Its near impossible to do so when she has an infection. I don't like the way it looks or the way its making her feel, but it is the way it is. She has a nice glow this morning from her elevated bili. She's had no fever for over 36 hours now. No breakthrough tremors or rigors since starting the two new antibiotics. Her cultures are showing no growth at just over 24 hours. They won't be declared clean until 72, but 24 hours is progress. She has a horrible, horrible wet cough. Thick, clear secretions that are coming up from her chest, but her lungs remain clear and sound good. She aches. Her body basically hurts from being overloaded in the tissues and dry in the vessels. She doesn't like to be touched, or moved, or picked up. She is awake and alert and communicating her wants and needs.

We are sitting here administering IV antibiotics exactly as I do from our home. That is all that is going on. We aren't correcting fluid status or her liver numbers or anything I don't do for her at the house. We are waiting on platelets. So she spends her days lying in a hospital bed instead of her own. She is surrounded by pumps and alarms and people coming in and out at all hours of the day and night. She's not complaining, and neither am I. Seriously, they are the kindest, sweetest, most helpful hospital staff I have ever encountered. They are just SO nice to us. What I am saying is that its more comfortable to be sick in your own home, in your own room, in your own bed surrounded by family. It just is. I just don't know though...we still have not decided what is in her best interest. Her physician will be in the OR for a few more hours and we will talk and decide when he comes to round.

The best thing that could happen for us today is for them to find a match for her platelets and to get an infusion started. Then this very complicated part of our life will be not so complicated if that makes any sense at all.

If we go home we run the risk of any platelets that have been donated and end up matching her going back into the blood bank and having to start all over again. Thats not really appealing to us, but on the flip side as the antibiotics kick in and start to get the line infection under control then her body may create a whole new batch of its own platelets and an infusion could be avoided all together. There are really no easy solutions any more. If a platelet transfusion can get this complicated then I think I finally believe them when they say to us, "There are no easy choices, solutions, or answers for Ashley anymore. Its all hard from here on out. "

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