Ashley's Story

She will leave fingerprints all over your heart


Gram Positive Cocci in Clusters

Ashley Kate is sick today. She went to bed last night happy, "healthy", her normal little self. She woke up this morning not right. It went from just a look that I recognized to a different type of nausea than her normal every day, to full out vomiting of an awful smelling bile(again different than her normal bile), to becoming lethargic, and running a fever.

I knew instantly it was a line infection, but really didn't want to speak it aloud until confirmed. Just minutes ago the lab called us to confirm the positive blood cultures.

I'm so disappointed. So sick over it. So sad.

She's been out of doctor's offices and hospitals for over 4 months and we vowed not to speak of it because in our world the moment you mention a "good" run it ends. Usually comes screeching to an end. I can't explain it, but its an unwritten rule in the world of transplant patients that nurses don't speak our children's names or mention that they wonder how so and so are doing and parents don't speak about how long its been since the last line infection. As soon as you do then the inevitable happens. You can argue with me to the death on this one and I will show you time and time again that it is true. Again, I can't explain this, but it is the way it is.

Just yesterday I called to make her an appointment with her team in Shreveport since they hadn't seen her in over 4 months. I wanted to make sure to take her in even though she has been amazing before the end of the year so no one would say we haven't seen her in our office so we can't write TPN orders, or send this order or that if we needed anything. Seriously, now that I went and scheduled the appointment less than 24 hours later she's sick. Why does it happen this way? It just plain sucks. Sorry for my language but it does.

We were hoping to get an early jump and start a broad spectrum by this afternoon but it didn't happen. We were given the call just before 6pm that they would call in an IV antibiotic first thing in the morning. Now even more than it did around 6 this evening it makes my stomach sick to have factual knowledge that indeed a bacteria has invaded and is attacking her blood stream. I knew it had, but was still clinging to the hope that nothing would grow out and perhaps it was just a 24 hour thing with her. No such luck this time.

So my sweet little girl lies in her bed tonight, body under attack from a bacteria that won't be identified positively for at least 2-3 more days with nothing to fight against it until tomorrow. We will be lucky to have a defense for it by noon. I'll feel really lucky if we can get meds delivered by then.

I will say that she is resting comfortably at this moment and she even seemed to perk up a slight amount this evening when her fevers broke. Those are positive signs. As always our plan is to keep her here in our home and to treat the infection with everything humanly possible as long as she is stable. My goals never change when it comes to this. Ash is better at home. She heals faster. Is more comfortable. Feels safer.

I assume its the dreaded staph or something along those lines. It seems to be our nemesis.

Nothing like be reminded of her frailty mere days before Christmas. It seems to have shattered the illusion of safety I've tried to live under the last few months.

Once again I'll remind everyone out there as I was reminded just today... this little piece of plastic that is inserted into her superior vena cava is all that keeps her alive. Its also what very well may kill her.

I hate this part of our life. Truly hate it. At the very minimum my heart is hanging on to having 4 1/2 more years with this very catheter that is infected. Thats the minimum length of time my heart is hoping for.

In all reality eternity with her wouldn't be long enough for me. So as the rain falls from the sky tonight the tears I've been holding back for so long not allowing to fall because all was "well" in our world are falling again. When Ash is sick our family hurts. Everyone of us feels it. You can see it in our faces. Hear it in our words. Catch glimpses of it when you look into our eyes.

My hope is that we turn this around quick.


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