A little more each day
I think overall Ashley Kate is getting better a little more each day. She seems to have more time awake, more opinions, more interaction, and more energy as the days pass. She is still very, very weak and still sleeping a lot more than normal, but I am encouraged as I watch her get back to more of a baseline then what she had all of last week.
We drew labs yesterday morning and most everything was unchanged. We saw a small improvement in her bili and we are very grateful for it. It went down about 3 pts between Wednesday and Friday. It is still over 20(the acceptable normal being around 1),but its no longer 25 so thats good news. Her skin remains golden, the whites of her eyes very yellow, and her urine a fluorescent shade of orange as she excretes the bili from her system. Her mouth is slowly improving, but improving. I still pull strings of bili stained mucous off of her tongue and the roof of her mouth, but she seems to be able to swallow today.
We have a long way to go before returning to the Ashley we had just a couple of weeks ago, but I think we can get there. She encourages us so much each day with her ability to cope and come back time and time again from the unthinkable.
As far as fighting the infection in her line I don't know if we will be able to clear it or not. There are not enough hours in the day to actually infuse everything she is supposed to be receiving. Her IV meds take a total of about 7 hours a day to infuse(two antibiotics and IV lasix) and her TPN runs for 18, her IV fluids 24, and her Omegaven for 12. Add to that the vanc locks we want sitting in her lines and we simply don't have enough time. Since nothing is cleared as being compatible to run with the Omegaven then we have to disconnect her line for those 7 hours that the meds infuse and that leaves us 1 hour shy of the number of hours we need each day to finish the task. It is a constant setting of the alarms to lay out meds, infuse meds, flush off meds, and re start TPN. The schedule is so complicated that even when I try to write it out I get confused. It only seems to make sense inside of my head and I'm thankful it is clear there or I'd be losing my mind. Ashley is slowly reducing the weight that was placed on her last weekend as her body began to third space its fluid. She is now wearing her normal clothes more comfortably. As of Thursday morning she was down 5lbs with only 10 more to go. I'm pretty sure just by the way it feels as I pick her up that she's lost even more than that now.
I know Ash is more comfortable here in her home. You can see it on her face. You can read it in her eyes. You can hear it in the one or two giggles we have heard out of her in the last few days. I'm glad she's here.
We will be seeing our Shreveport team on Wednesday afternoon this week. I'm hopeful she will continue getting stronger a little more each day as we approach that drive.
Many, many thoughts run through our heads each day about the place we find ourselves in at this time. So much is dependent on how soon( if ever) we can clear her of this staph infection. I don't know what will happen from moment to moment so trying to formulate a plan for the next phase of her life is useless. I just keep going each day never taking for granted that she is in it. I know there may come a day that she is not. Its that very real threat that keeps me working so hard to enjoy each moment of my time with our Ashley. Words to pray are hard to come by at this time and to be honest we've just run out of what to say to Him. I'm so very grateful that so many of you are praying for us right now because we are tired and the best I can do some days is just to pray these words, "I don't know what to say anymore. You know it all. You know already." I'm left at His feet hoping to find more grace and more mercy. Its the best I can do.
Thank you so very much for asking about Ash, about our family, about us. Thank you. It means so very much.