The Simple Life
Last Friday we finished up Ashley Kate's IV antibiotic infusions. Can I just say, "YEAH!"
We have returned to what I like to call "the simple life". Its just TPN prep, basic line care, dressing changes, g tube issues, and ostomy care. That my friends truly is "the simple life" and I am grateful for it.
I find it amazing what two nights in a row of uninterrupted sleep can do for a person. We were hooking up 7 medication infusions round the clock as well as TPN and Omegaven. That makes you a little sleep deprived and leaves you feeling like a shell of yourself. Ash has been fever free since Thursday of last week and we have seen no growth on her last set of line cultures. We continue placing vacomycin/heparin locks in her lumens and its hit or miss as to whether or not we get those to draw back out. Its an emotional up and down with this line that leaves me praying and pleading each time I attempt it. No blood return all day yesterday and then it suddenly appeared late last night. Not sure what today holds in that area, but Dave probably summed it up with a statement to me yesterday, "We may be coming to the end of the life span of this line." That left us both silent. The pit in my stomach got a little deeper. The worry in my mind a little greater.
I have plans in my heart that I hope to accomplish. Plans for our family over the next several months. If we can make it there then I will resign myself to listing Ash for transplant. As much as it grieves my heart, I suppose I will. Still there is no peace or clear direction, but we know we have been placed in an impossible situation that forces us to make a decision.
Ashley Kate is happy. She is silly and fun loving and carefree. She is exactly what she should be at 5 and 1/2 years old. I love her this way. I love watching her eyes light up and seeing her smile and listening to her giggle. Its the love I have for all of these things that make me hesitant to "go" and hesitant to "stay". What are we giving up when we go? What are we giving up if we don't go? Its all too much for my heart to dwell on and so instead of dwelling I try to ignore it all and just live.
We spent our weekend working around the house. Giving the exterior a little "face lift" and enjoying our time spent together. Hard work isn't that hard when you do it together. It actually becomes enjoyable and memory making. I think the boys would have been ok without the wasp stings they endured, but still it was a memory in the making. I have to admit that as hard as I tried not to giggle it was difficult when remembering the hollering, the running, and the FLINGING of paint that occurred when the wasps would attack. Just watching those big, tough, guys react to the wasps was a little bit humorous. The stings of course were not.
We have baseball, soccer, volleyball clinics, and a doctors appointment with Ash's Shreveport team on the schedule this week. Not too much. Just enough to keep us going. Busy is good. It means things are normal in our world. Other than that I'll be sitting out back watching Ash play in the water and not doing too much of anything else.