Its been one month and one day and Ashley Kate's central line is still growing gram positive enterococcus faecalis. Never in the very complex history of her life has she had an ongoing in infection for this length of time. I'm beginning to fear that this may be the one that we are unable to clear. What all that means is kind of up in the air with no clear answers. My heart skips a beat or two when I stop and think about it for too long.
On the other hand she is doing amazing in spite of the infected line. It is obviously not a systemic infection at this time. She may run a low grade fever for a little while each day and her renal panels are all out of whack but other than those two issues she is just fine. She is happy and playful and funny and opinionated and her normal 6 year old self.
Its hard to balance the very sick inside with the very normal outside. I know she's sick with a life threatening infection on the inside of her. She really is very sick. She's just unaware of that fact. I love that about her and I'm so very grateful that its not affecting her quality of life of this time.
Each time we draw cultures I find myself becoming more and more discouraged as the phone rings and I see it is the hospital calling. I know so many of you have ideas and advice or suggestions on how to treat this line infection and I do appreciate your sharing. One thing that we have to balance in the world of transplant is the ramping up of her immune system. She still houses two donated organs inside of her little body and many times the treatment options, especially the all natural(which of course is what we would love to be able to use with her) do exactly that...strengthen the immune system...which in turn may cause her to reject her organs. The last thing we want to add to this complex situation is a bout of rejection. It would be devastating to her well being at this time. We have to balance so many things when dealing with Ash and her organs. Its not a simple case of "just an infection". Its very, very complicated.
We have had some ups and downs lately. Seems like one thing leads to another and another another and I find myself trying to keep my head up. Just normal life stuff thrown into the mix of line infections and transplanted organs. Two dead car batteries, a flat tire, a broken wrist, and positive cultures twice all in the same week can begin to over whelm. Like I said, normal day to day stuff, just seems magnified when running on little sleep.
On the positive side of things Blake had his first summer tournament this past weekend and played really well. He hit an amazing shot that left the field for a two run homer and it just happened to happen in front of some scouts that were there watching. He had met one of them the previous day and after watching him catch two games they had some great things to say about him. Makes a mom and dad smile when chasing a dream with one of your kiddos to see good things happen for them. He has a full schedule this summer and we will be traveling each week to a new location. A week from today he has his first major try out and all though we know its a long shot to actually get chosen we are so excited he was given the recommendation and formal invitation to attend. Just a small step closer on the long, long journey of playing college baseball. Two more years to make it happen! He is playing ball with two of his closest friends and a great team of players with an amazing coach that he respects. It all adds up to making it the summer of a lifetime for him.
Allie is busy, busy training for volleyball as she prepares to try out for the high school team in just a month or so. She's also playing some summer league basketball and trying to decide if it is the path she wants to pursue in the next few years or not. I'm a little nervous for her as she plans to play 4 sports and cheer next year in addition to everything else she is involved in. I know without a doubt she is capable of doing it all, I'm just worried about that knee of hers. She's an amazing athlete and so very talented. She continues to grow and mature more and more each day. She keeps us laughing with her fun personality and keeps us on our toes as she grows more beautiful by the minute.
Life never seems to be simple, it keeps getting busier and a little more complicated as the days pass, but more than anything we are so very grateful to be living it together. Ash is home with us and she's happy and we couldn't ask for much more than that. With Blake and I traveling 4 out of 7 days a week it may be a few days between posts toward the latter part of the weeks. Just easier to leave the computer at home and concentrate on spending time with him while I can. Hope your all well and enjoying some time with your kiddos now that school is out. Thanks so much for loving our sweet Ashley and for continuing on with us. Talk to you soon. Trish