Ashley's Story

She will leave fingerprints all over your heart


From Bad to Worse...

This day has gone from bad to worse

...with no sign of it getting any better any time soon.

It began with a disastrous visit to the dentist. Honestly, it was a mistake to take her there. They told us to come back around the age of 6 when all of her current teeth begin to fall out or when we can get her vomiting under control. The only "good" thing that happened at this appointment was the sticker with a toothbrush on it they gave to Ash at the end. She really, really liked it. The basically said her teeth have eroded due to medications and vomit. Nothing can be done to help them.

Once we arrived back home she dropped that toothbrush sticker and leaned over to pick it up causing her to fall on her FACE on the wood floors with no ability to break her own fall. She came up off the ground with blood spurting from everywhere. Her lip was split open and her nose busted. Probably the most difficult thing we have been through with her at home. I was so scared! Can you see the bloodied nose and swollen lip? Its kind of hard to tell in the photos, but trust me when I tell you its nasty.

Then came the stool. I'm talking massive amounts of stooling out into her ostomy bag. By 5pm I was 700ccs behind with no way to give the fluid back to her. I knew by morning we would be in big trouble. You can only replace so much enterally. She had to have an IV, but I had no idea where they would be able to place one.

So on to Shreveport we went knowing that she needed some type of a line in place to keep up and to try and figure out where the stooling out is coming from. I'm just guessing a scope will be in our near future if things don't change soon. Currently we are 1200ccs behind.

We sat in the ER for about 4 hours while they tried to figure out what they wanted to do before bringing her up to the PICU. Most of her veins have blown by attempted IV from this past week and she is covered in bruises. They finally found a vein in her foot, but it blew immediately. They gave up down there and sent us up without an IV.

So our little pickle sat and waited knowing all along that they were going to begin trying again. Sometime around 11pm they finally placed an IV and have now started an IV bolus of fluids. I believe she is being scheduled for the OR for tomorrow morning where they will attempt to place another central line until we figure this whole mess out.

This has been one of Ashley Kate's tough days. Her first "normal" kid injury took place. Can you imagine trying to explain that we weren't in the ER for the busted lip and bloody nose. "Just ignore those injuries please we have bigger issues to sort out." I can't imagine what people were thinking when they saw this beautiful baby with her bloodied nose and busted lip. She can't stand up and doesn't even walk! Still she managed a doosy! She's had every vein in her extremities stabbed in the last week and today they re-stabbed a few. Still she cuddled up with her daddy and gave him the best "xmo"(Eskimo) kisses ever with the tears still wet on her cheeks.

To end the day on the right note we received an e-mail letting us know that the house my eye has been on is more than likely not going to happen for us. Another client of our realtor made their offer before we could and I'm not feeling that this it gonna work out. Its pretty much a broken dream and my heart's pretty much not really into this whole house hunting thing. I love my little yellow house, but the problem is that its too little. Too little to adapt for Ash's needs and leaving it is breaking my heart. I know I'm not supposed to get emotional about the process, but its really hard not too. I don't like this game one little bit. I guess I'm just tired and not having that good of a day. I think I'd like to give it up before it really even begins. This is not fun. Not fun leaving behind something you love and not knowing where your headed just knowing that you have to go somewhere. That little e mail was just one more thing that I didn't need to happen today.

Ash is settling down for the night and I'm going to try and join her. Dave's already snuggled in the bed with her, so I'll take the couch. Another trip to the PICU. Life is anything but predictable for us. When I woke this morning I had no idea we'd be sleeping here tonight. A perfectly good day can turn bad in just a matter of minutes. Still I look around and see how blessed we are. Goodnight. Trish


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