Ashley's Story

She will leave fingerprints all over your heart


The last couple of days

...Ash has been struggling in a couple of areas over the last couple of days. In the grand scheme of her life these struggles are small, but still irritating and painful. She's been fussy and not too cooperative. Her ostomy site is inflamed and causing her great discomfort. She just can't seem to leave her bag alone and because of this we have discovered her covered in stool and blood for the last 3 nights. Two of those three nights it has been changed twice. Tonight we have already changed it once and from the sounds of it we will be doing it again very soon. I hate this for her. The more inflamed it gets, the more she pulls it off, and the more it has to be changed which in turn cause it to become more inflamed. Its an awful cycle and not one that much can be done about. The other issue is her mic-key button. It too is inflamed and has a large amount of what is called granulation tissue that has grown around it. Ordinarily when this occurs we use a wand of silver nitrate to burn the tissue off, but this time its different. The tissue hasn't formed around the button, but rather inside the hole in her tummy that the button is inserted into. We don't really know how to handle it this time. It looks as though the button needs to be removed in order to reach the tissue and burn it, but then the button would have to be re-inserted and this would push some of the silver nitrate into her stomach and the burning of that tissue would not be good. We brought it up with two of her doctors and they both just told us to burn the tissue, but I don't feel as though the really understand where it is located. I get the impression they think it is just around the button on the exterior of her tummy. Neither of them have taken the time to look at it so were kind of stuck. The button is very, very painful and connecting her feeding tube each night sends her into a screaming fit. I can tell it is causing her great discomfort and I don't really know how to remedy it for her.

In addition to these issues her feeding schedule has been thrown off. She didn't feel like eating much on Monday(I have no idea why) which caused us to increase her time on her feeding pump so she didn't lose to many calories, but the extended time on the pump caused her not to be hungry today. I again had to increase the feeding time on the pump tonight which is going to cause us more trouble with eating tomorrow. I need to allow her to get hungry enough to want to eat her calories by mouth, but I am afraid of her getting dehydrated and not nourished enough on that day. An ugly cycle.

On the brighter side of things Ashley and her daddy made a guest appearance at the East Texas Angel Network fund raiser tonight. That was an honor. Neal McCoy and his Angel Network are amazing. They have incredible hearts and they give so much to the chronically ill children here in east Texas. We are so honored to be a part of his group. If you have the opportunity to attend his fundraising concert this weekend then I encourage to go. You will have a wonderful time and on top of that you will be supporting an awesome group of people. Neal McCoy and his family and friends have huge hearts and we are so grateful to them and their organization. They have been there for us during some of our hardest of times in the past few years and have loved Ashley Kate from the start. It was fun for Dave to appear with Ash on his hip and allow them to see how far she has come. Last year Dave spoke for the Angel Network while Ashley and I were in the PICU as she fought for her life. I know having Ashley there with him tonight was a huge blessing. God has been so good to our family.

Ash has PT tomorrow and will attempt to ride again on Friday. In all honesty I have been too embarrassed to talk much about last Friday's riding lesson. Let's just say she was less than cooperative and not real excited about getting back on Hope. I told Dave I wouldn't be surprised if they told us "Thanks, but no thanks" after her un cooperative spirit last week. She spent the entire lesson screaming as she lay on her back on top of the horse. At one point we could hear the therapists singing the songs from Blue's Clues in an attempt to calm her down. We had to laugh at that because...well... it was just funny to see 3 grown women trying to remember the words to "We just got a letter" as they managed our screaming toddler on top of a horse. Anyway, were hoping for a better session this week.

We are busy planning a small celebration for Ash's 2 year transplant celebration Friday and Blake's 13th birthday party for next Friday. If you haven't figured it out by now I LOVE to plan parties for our kids. Nothing makes me happier than to have a few hundred lists scattered all over the table in anticipation of one of their birthdays. Too bad Blake won't allow me to scatter pink all over the place. Instead he has decided on a party in the woods at his grandparents and a competitive game of capture the flag with all of his friends. I know it will be great fun, but a few pink balloons in the trees might be festive don't you think? Oh, well...its his party.

I guess I should jump in bed. The rest of the house is quiet and I think I'll take this opportunity to close my eyes before the pickle pulls off that bag. Goodnight guys. Hope your day was blessed. Trish


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