Ashley's Story

She will leave fingerprints all over your heart


On Her Way Back

Over the last 36 hours or so our sweet Ashley has shown her daddy and I that she is on her way back to us. Her sweet smile has returned and the twinkle in her eye is shining. She looks a little rough, but to see her spirit and her personality begin to emerge from underneath all that she has been through over the last 3 weeks has done amazing things for our hearts.

Her last 2 steri strips over the incision on her neck finally came off last night and so tonight she will be receiving her first shampoo in 3 weeks! Trust me, I KNOW how gross that sounds, but it is what it is. I was given strict instructions to not allow that incision to get wet at all and so shampooing was out of the question. With cheeks as round as Ash's its impossible to keep her neck clean and dry while washing her hair. I'm so excited to have the opportunity to make her smell nice and look nice again.

Dave and I have had so much fun playing with her the last couple of days. She is signing and communicating more and she is cracking us up with the things she has to "say". I think I've smiled more in the last day or so than I have in over 3 weeks. When Ash is not well and not happy it is so very hard for us to keep our spirits up. I'm just so thankful.

Tomorrow morning she and I will be leaving the house at 4am to make the drive to Shreveport. I would like to say I'm not nervous. I would like to say "this is just another line placement". The truth is that after living with what happened to her from the last "line placement" attempt I can no longer just assume things will go well. I hope and I pray that they do, but until I see that tiny girl open her eyes with a non -infected, fully functioning line in place I will not breathe easy again. The plan has changed and even though I don't like it much, I don't get to choose the way things will be done. They will be removing the infected line in the OR tomorrow and placing the new one at the same time. We all know the risks of the new line becoming infected are high, but this is what the surgeons would like to do and its their OR I'm working with. My prayer is that the last 10 days of anti biotic treatment have somehow cleared the current line and that no bacteria will break off and travel her system in search of the newly placed line. My other concern is the area this line is being placed. We essentially have no other options, but the likely hood of keeping it dry from her ostomy and her g-tube is almost impossible.

On top of being concerned over her line placement, we are just overall a little sad to know that she will once again be in pain and that her spirit will recede behind the pain until she is feeling well again. This is heartbreaking because we have all missed her silliness so much and having it back for such a short time just seems so unfair.

I have managed to get her tube feedings up to 15ccs an hour. I know it doesn't sound like much, but from 3 to 15 is really a lot of progress. At this point we are thankful for each and every cc of formula that is being pumped into her transplanted bowel.

Still we find ourselves without Internet and phone service in our little yellow house and have decided to forget the hassle of trying to have it re-established until our move at the end of the month(if you need to reach me my cell phone is probably the best way to do that). That means that our updates only come every couple of days as sneaking away to the office is proving difficult for me. I wish Ash was well enough to just jump and run with me, but she is not and without help to watch her then I have to wait until her daddy is not working. She is still struggling with lots of respiratory junk and vomiting, but as you can see from these photos she's got a smile on her face and in her eyes(just ignore all the ugliness on her neck. I'm trying to). I'll take that over the blank stare we've had the last month any day.

We ran away in the RV for the last couple of days and had so much fun just hanging out with our kids. Ash was feeling better and we needed a break from all that has been going on in our piece of the world. We're home now and will be all week. The packing is well under way and seeing all of those boxes scattered around our home is both sad and exciting at the same time. Life is so full and so busy right now We are surely blessed. Thank you so much for your words, your prayers, and your time spent here with us. You are loved and appreciated. Hope you have a great week. Trish


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