Have you ever been...
so thirsty that you would be willing to suck the moisture from a damp cloth just to feel something wet on your tongue? This my friends was the way Ashley Kate spent her entire day yesterday. Longing for a drink of water, a piece of ice, and finally settling for a wrung out cloth that had once held cool water. She pleaded with her eyes, clapped her hands, hit me when I was close enough to reach and whimpered. My heart was broken for her. Finally once she settled in to her room around 9pm I gave this baby her sippy cup full of cool water(don't tell her that I opened up her g tube and let it all leak out as quickly as she could pour it in. What she doesn't know won't hurt her). This baby was thirsty!
We have had to "dry" her out in an attempt to rid her lungs of the extra fluid they like to hang on to. She is so dry the moisture has left her skin and she is flaky and itchy. She scratches and claws at her arms and legs and I massage her skin over and over again with lotion trying to make it feel better. Yesterday she was allowed no water because of her scheduled trip to the OR. Today I have given her cup after cup even though I don't dare let it stay in her tummy. I sure don't want her to throw up and start this whole infection process over again. For now she is content to wet her mouth and her throat and doesn't seem to care that none of it is staying inside of her.
No new orders or changes for her today. We were told that she will be the first to be "bumped" since there are no available beds in the PICU. This means we will be placed on the general pediatric floor where the influenza virus as well as many others thrive as if it were the promised land. My earnest prayer is that no other children get sick enough to need our bed here in the PICU. I do not want to expose Ashley Kate to all that awaits her upstairs. We need to get out of here and to this point she has avoided picking up any secondary infections. Coop is not an option for us at this time because her chest tube is hooked up to suction and there is none available in the coop rooms. Her oxygen requirements are also too high for them to allow her over there. What a dangerous place we are in. Too sick to be off the floors, but to well to hold our place in the PICU. Please don't misunderstand me. I am THRILLED she has remained off the ventilator. I just don't want her to be exposed to any more dangers.
So her chest x-rays are improving, but we are told that is only because of the chamber and the suction that her chest tube has been hooked up to. If they pulled it, or turned of the suction the fluid would re-accumulate and we would start all over again. So we wait. Again. We wait until her body stops producing all of this extra fluid that likes to compromise her lung capacity. How long do we wait? Only heaven knows. For real, only God knows. Why does she consistently struggle with fluid in her lungs? Again only God knows. They know that some transplant children chronically do this and others do not, but they do not know why. Ash is one of the "lucky" ones who does. Anytime she gets sick her respiratory system is affected and she struggles to breathe. Unfortunately it looks as though this will always be one of her main issues post transplant.
When do we go home? When her lungs heal. Completely. Can we have a transfer to Shreveport? We would hope so since PRAISE GOD her organs have not been affected with this admission, but at this time the doctors are not supportive of it. So were stuck in cold, cold Omaha and our only hope for seeing Dave, Blake, and Al is a miraculous recovery that allows us to board a plane and fly to Texas.
The kids schedules have picked up again and we are thrilled for them. Two of the things they love the most begin tomorrow and we are determined to allow them to keep as much normalcy in their lives as possible. This also keeps Dave with them so that they will have some parental support. My new goal is to be home in time to celebrate our 15 year anniversary together. 13 days. Thats not long, but I believe it could happen. Obviously our family vacation has been canceled and because of her lung issues will not be planned again for a very, very long time(skiing,hiking, and mountain air just won't be an option for a while for our little pickle). So spring break will more than likely be spent in Omaha Nebraska or on that favorite little street of our in Longview, Texas. I prefer Texas, but thats just me.
Ash has now put out close to two "diet cokes" worth of fluid from her left lung. I find that amazing! Where in the world is it coming from? She is now drifting off to sleep and I am going to heat up a tv dinner for lunch. Thanks for checking in with us today. I hope your day is a good one. Take care. Trish