Ashley's Story

She will leave fingerprints all over your heart



We were just alerted to the fact that Ash's hemoglobin has dropped 6 points since she was admitted Wednesday evening. If we had been drawing blood and taking labs I would maybe understand this, but the only blood that has been drawn since then is 2ccs. That is not an explanation for this drop. She's gone from 12.6 to 6.9 in less than 48 hours. Is it even possible that she lost that much blood in the OR yesterday from a line placement? It doesn't make any sense at all. Dave and I are a little nervous and wondering if she's bleeding somewhere internally. If she were I think we would be seeing more problems arising. I think.

It does help explain her higher heart rate, pale skin and blue tinted lips. She will be receiving blood today, and probably albumin, and a lot of other stuff too.

Ash is currently on no feeds and from rounds this morning it sounds as though we will be starting our journey to full feedings and no TPN all over again. Problem being? She doesn't have a line that TPN can go into to. The line that was placed yesterday was only placed in a collateral vein. Its basically a glorified IV that was inserted through the incision in her neck and tunneled into this large collateral vein. It can basically only handle IV fluids. I guess in one way you could say she went through everything she did yesterday for nothing, but none of us had any idea that they would not be able to place a central line because of the state of her veins. We just didn't know that. Even with the ultra sounds that were done we had no idea. We all knew it would be difficult, but not impossible.

How in the world are going to get through this virus or bug or whatever is causing her high stool output? I honestly don't know.

The team here is really encouraging us to consider taking her back to the OR next Wednesday and placing a port in her left femoral vein leading back up toward her hip. This port would be strong enough to run antibiotics through and TPN and IV fluids if they were all need. The biggest problem we are facing is the not knowing. We just don't know if she'll need it. So do we do it just in case or do we wait until she's crashing and we have no immediate access? Everyone, including our surgeon is "just so tired of sticking her". Those are his words not mine, but I agree. The port would require her to be stuck every week, but it would be a for sure stick. No guessing and not multiple attempts.

I just don't know what to do.

One part of me wants to save and protect those femoral veins for the future. What if we lose those during this whole mess and when we need them to save her life we won't have them? Dave and Dr.S said they don't live in the land of "what ifs". Unfortunately, I do. Remember how Dave and I live in different lands? His, the land of rainbows and daisies and mine, the land of reality. How I wish I could move on over to his stretch of land and leave mine behind forever!

What needs to happen for us? She needs to stop stooling out in such high amounts. IF she could stop that, then we wouldn't need IV access to keep her hydrated. This is what NEEDS to happen and then of course for her to "just get well and grow up". Yeah, I think thats what we all want to happen.

There is talk of "topping her off" and allowing us to take her home for a few days giving us time to talk, pray, and make a decision. The surgeon just wanted to share with us that "she is a venous nightmare. When we read her name on the OR list we shake our heads and say "oh, no not again."


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