Ashley's Story

She will leave fingerprints all over your heart


Look Who Woke Up

About an hour ago Ashley Kate decided to open her eyes for the first time all day. After a little coercing she actually sat up in the bed. She is now playing Fruit Ninja.

After 3 doses of lasix she's still up about 6 lbs. Mostly in her face and neck! Thanks to SVC syndrome. Her hands, feet and legs are swollen as well, but like I said its mostly in her face. At least she has eyes today!

One of her doctors came in this afternoon and we had a long talk. My head is still spinning from it and even though most talks from our physicians these days are necessary it doesn't make them any easier to have. Our options are running out. We all know it, and it sure does hurt to have to face that reality.

We are trying to decide where Ash would be the safest while waiting on platelets to arrive. She is dangerously close to the level where spontaneous bleeding can occur and if it were to happen then it would be an emergent situation. Still though the likely hood of it actually occurring is not high. They are considering sending us home for 24-48 hours while they work on acquiring the right platelets that her body will actually use rather than attack and consume. The expected outcome from last nights infusion should have given her at the very minimum another 50,000 on board but instead she lost 15,000. That result made all involved think she has created an antibody to the infused platelets and her body actually destroyed them. The blood bank planned on taking all the platelets donated today and matching them to Ash's type and cross to see if any came in that she could accept and use rather than consume. If a match comes then they will arrive here sometime on Wednesday. Sitting in a hospital is dangerous in itself with all the exposure to her very suppressed immune system. So...we are trying to develop a plan. First though they want to get her fluid status a little better so she won't have as much trouble breathing as she did overnight. The hope is that with the two drugs they are using on this bacteria that she might actually begin to make some platelets in her own bone marrow. The best thing that could happen for us tonight is for her body to make some platelets. She is literally at the lowest level she's ever been and thats including her days of chemo treatments. Pretty scary stuff.

For me one of the hardest parts about this cycle of line infections we are stuck in is wanting to know where they are coming from. Is it something inside of her or is it something we are introducing to her when access the line. I find myself second guessing everything when in all actuality she just has a chronically infected line. Its not me. Its not Dave. Its not us. I'd like to take the blame for it because then perhaps we could correct it, but like they said to me today, "her line is colonized and the best we can do with it is try and give her quality days in between her sick days". This current bug could have come from something as simple as brushing her teeth, or it could have come from inside of her, or off her own skin. There is no telling. Its just there and now we have to fight it the best we can.

We admitted for a platelet infusion. We can't get the platelets as of yet so do we stay or do we take her home? There is no right or wrong answer. She has a very wet cough now and everyone wants to get her out as soon as possible to keep her as safe as possible. Its a very fine line we walk these days. Trying not to slip on either side of it but rather stay safely in the middle of it. Unfortunately our "feet" seem to be a little wider than the line.


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