Ashley's Story

She will leave fingerprints all over your heart


Still Learning 6 years later

I guess its true that you never stop learning. The amount of "medical" jargon and procedures that have made up the "sick" part of Ashley's life is enough that I could sit down and write a book about. Seriously, I never knew I could acquire this much information.( I have NO desire to go into nursing or the medical field. NONE. Even though it is often suggested by our physicians:) Its so much so that I tell Dave quite frequently that my brain is tapped out. Seriously, I can't retain new information( such as how to do something on the computer much to his dismay). Basically if I don't HAVE to know it in order to take care of Ash then it goes in one ear and out the other. Not intentionally, its just how it works. I think my brain is tired.

So...apparently there are two types of platelet transfusions. The type that is specific, given after your blood is type and crossed. Ash is o+. Then a type called autopherese?. The second can be given as a universal type donor and anyone can get them(I had no idea about this). Last night we did a type and cross as we usually do each time Ash receives blood or its components. I assumed we were giving her platelets that matched her blood type. Instead we gave her autopherese platelets in hopes that it would work because it takes 24hours to get the platelets type and crossed and receive them from the Louisiana Blood Bank. When the doctor found out how long it would take he decided we would try the "universal" donor type(since hers were so low). So this morning when I asked what her platelet count was I was shocked to hear that it had dropped even more. Then I began acquiring my new understanding of platelet transfusions. Hence...I'm still learning 6 years later.

To say I was a little confused and disappointed is accurate. This morning the lab told us they used the blood we drew for her type and cross for something else and so we did not order the correct platelets last night in hopes that the autopherese would do the trick. I just drew another type and cross and so the 24 hour wait for their arrival begins now adding at least one more day on to this admission.

In addition to the 2 hour platelet transfusion last night we gave a 4 hour albumin infusion. When we added all of that volume to Ashley's already third spaced, fluid overloaded body she began to have trouble keeping her oxygen saturations up. She's been on 40% oxygen support through a mask since about 2 this morning. She sounds very wet. You can hear the rattle of the water with each breath she takes:(

We also added another antibiotic into the fight against this bug.

When Dave left about 8 last night, Ash was looking better. She was alert, signing, being so so sweet, and cuddling with us while she played on her Ipad. I think we both felt she was turning this around. This morning I'm discouraged by the need for oxygen, the drop in her platelet count again, and her overall appearance.

We've had little to almost no sleep. Too much going on in here all night long. Between meds, blood draws, infusions, and vitals I was up and down about every half hour to hour until 5am. We did sleep from 5-7. I'm not really feeling up to getting ready for the day. I guess the reality of this world, the one we sometimes have to live in, has hit me hard today. I just want to step back over into our other world. The one we created for Ash at home.

Its a busy week for us at home. Its the last week before school starts and the older kids have a lot going on. Not sure how to pull it all off, but I'm sure it will all work out. They are old enough to pick up their schedules and find out where the rooms to their classes are on their own I suppose. I just really wanted to be there with them because thats what moms are supposed to do. If we make it home by the weekend then I should have time to get supplies once they pick up the lists from their teachers. I'm not feeling as hopeful as I was yesterday about being here for just a day or two. I sure hope I'm wrong.

I have full confidence that Ash will come through this infection. I believe its just like all the rest. She will perk up, the meds will kick in, and we will go home. As soon as we can get those platelets back up and pull this fluid off then we are going home. Please don't mistake my exhaustion for despair. Although I know in the world of central lines that infections are dangerous, this is just part of our everyday and I don't panic like I used to. This line has been chronically infected since its placement on December 28th. It is what it is. Its our life.


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