Ashley's Story

She will leave fingerprints all over your heart


Making Just one Change

After getting word from our transplant center yesterday evening they only want us to make one change for now. We have added another medication to help Ash stabilize while her stool output is climbing. Overall her lab work looked pretty good which was very reassuring to me. That meant that I am currently keeping up with her fluid losses well. I replace IV fluids every 8 hours and was worried that perhaps she was losing too much for us to keep up on. Her lab work showed that we are staying ahead of the game and she is well hydrated although she continuous to lose large amounts through her ostomy.

We will not be scoping her tomorrow. We will stay with the original game plan and only scope her if she climbs to 100-150per kilo. Currently she is in the 70s. I know it sounds like a long ways off, but when dealing with a sickly bowel the numbers can change quickly. This is why I wanted to make sure they are ok with us traveling this week. At this time we will still make the trip. If things go south today or tomorrow we will not.

Her fever did break yesterday afternoon and she was a new kid once it did. She eventually got dressed(I mean I dressed her complete with an enormous raspberry colored bow. In case you didn't know big hair bows always make you feel better) and she was happy to leave the house to run an errand or two. We had to drop off her badly damaged eye glasses( which is why you haven't seen them since our return home) and run to the bank. She loves to be in the car. I think the change in scenery did her good because she was smiley and happy the whole time we were gone. She was doing so well I braved a couple of small stores and she wore her mask the whole time. I am so proud of how grown up she is and how much she understands that when the mask goes on it has to stay on. She played in her chair while I juggled three back packs, tubing, and diaper bag. On top of that I had to push not only her chair through the store but also pull a shopping cart along with us. We were not very coordinated and I had to apologize a time or two for being such a pain to other shoppers. UGH! I had forgotten how much work it is to leave the house when attached to all of that. When were home all of her pumps are attached to an IV pole and the tubing is nice and neat.

This morning she is fever free which gives me great hope that perhaps all of that fever was related to the TPA and working on her line the other night at the hospital. A friend called and reminded me that it is not uncommon for that to happen. Perhaps all of the cultures will come back negative and we will have avoided an additional struggle.

Today I'm hoping Dave can sit with her during the lunch hours so that I might run out again this afternoon for a couple of items. If not then I will go tonight while they are sleeping. This is usually the time I have to grocery shop(after 11pm or 12 am) and I have gotten pretty good at dodging the pallets and stockers.

So here's hoping for no news from the labs today. If they don't call then all is well. If the phone rings and they pop up on the ID then I'll know we aren't traveling and Dave, Ash and I will make a go of another Thanksgiving holiday. At least were not in Nebraska! I here its pretty cold there.

Hope your day is blessed. I'm off to give meds and wrap a couple of gifts. Pretty packages under the tree sure do make me smile. It just looks complete.


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