Ashley's Story

She will leave fingerprints all over your heart


Some days...

...I just get tired. Tired of the hassle. The phone calls. The fight to get done what has to be done. There are days when I honestly want to scream and say, "Don't you get it! She's sick and we need your help!"

I don't allow these days to get to me very often, but in all honesty I am so very tired.

Ash needs albumin. I mean really needs albumin. Albumin is a blood product. That means a nurse has to be present for the infusion. Just in case something happens. She has had it at least a hundred times over the last 3 years. Thankfully there has never been a bad reaction to the infusion, but just in case they want a nurse monitoring. We take her vitals every 15 or 30 minutes. I can't remember exactly cause I"m really tired.

So Ash needs it, but we can't figure out how to get it for her. I mean, we should be able to arrange it with our home health company, but it didn't go so well for us today. I really don't get it, and I'm trying not to be too upset about it, but after several phone calls(2 of which told me they would be happy to come out and infuse it) they said, "Were really sorry Mrs. Adams, but we just don't have time. We can't help you because were under staffed and we have three new patients to admit. So sorry." O.k. I was stunned. I really didn't know what to say. I had just been told not an hour before that they would be happy to help us as long as it wasn't a weekly infusion. What happened? I get that you are busy. I really do understand that. BUT... its not like we are a new patient. We have been with this company since Ashley Kate was discharged from the NICU. We ARE their patient. How can they say, "too bad, were too busy"? How does that work and what am I supposed to do? Now we have been left to scramble, and not to mention been left with a really bad taste in our mouths for this company too.

I've spent time on the phone with everyone and no one knows how to help us get an albumin infusion. The only thing our pediatrician's office and I could come up with was an admission. Honestly, the last thing we need to do is be admitted for a ONE hour infusion of albumin. Its the craziest thing I have ever heard of. Not to mention that it will be the most expensive ONE hour infusion in the history of albumin infusions. I am trying to find another home health company that can take Ash on by tomorrow. So far I haven't found one. If I can't find one then we will be forced to ask for an admit to our local hospital and get the infusion done. Unbelievable. It really is.

Our transplant coordinator was having a hard time believing that we don't have an infusion center here in town that can infuse a pediatric patient with albumin. To be honest, I'm having a hard time with that one too. This is the craziest thing ever. Its JUST albumin. I want to scream, "just give it to me and let me infuse it myself." Its not a difficult thing. I'll be the one hooking it up to her line and taking her vitals anyway. All they will be doing is sitting with us for the hour and writing down the numbers I report to them.

I'm really sorry for the yucky tone of this post. Like I said "some days" are just hard. Today has been one of those. I'm still shaking and still in tears. Who knows whats going to happen tomorrow. Her level has never been this low and we really have to get it up a little higher(.9 is just not acceptable). If your a local reader and have any ideas who can give infusions to a three year pediatric patient here in Longview could you please leave me a message? Or call me. My number is in the book.

Just another bump in the road called transplant. Hope we get over it without any more complications. I'm gonna try and get some sleep. My nerves are shot after today's events. Goodnight guys. Trish


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