Sweet Ashley Kate on her 8th birthday.
Ash has been hanging in there this week to the best of her ability. She's battling infection after infection and now they are just piling up on top of each other. I'm so so sick of the word infection. I'm tired of what these infections are doing to her. I hope that we will somehow be able to achieve a stability back on the other side of this whole world of infection someday. Her body needs a little break from all the fighting it is having to do.
I remember asking her doctors a few weeks back what we should expect to happen. The most concerning of everything discussed that day was the risk of infections and her body's inability to fight them anymore. I struggle with the thought that all may be lost to something as ridiculous as an ear, tooth, skin, wound, urinary tract, or pneumonia infection. Can you imagine having all of this list of infection at the same time? Ash has all but the pneumonia and we are doing everything we know to do trying to keep that away from her.
To date, since that conversation, and now currently we are battling several of the above listed and all at the same time. It seems so unfair. The combination of all the ongoing infections is that Ash feels pretty yucky most of the time.
I just received a call from the lab informing me that her follow up blood cultures, after a week of antibiotic coverage, have grown out a gram negative rod infection to go along with her gram positive cocci in chains infection. Seriously, I'm not surprised. The amount of swelling she's been experiencing along with extremely high fevers through last night told me that something else was brewing.
Ash has been sleeping for most of the day lately. She wakes late in the day, goes on a drive for a couple of hours each afternoon, and then naps for 6-8 hours without waking. Its been hard to watch as her energy levels have started to disappear. There is not near as much interaction with her as we are used to because she's sleeping so much. This is very, very hard on Dave. He isn't getting to spend much time with her at all because she's asleep during the hours in which he is home. If I had to add up all her waking hours for today it might total 5?
Specific areas of prayer needed for her at this time include...the blood infections, both the positive and the negative bugs to clear from her line, her ears, her mouth and teeth...she has several areas causing her pain in there, the severe swelling...this is making it difficult for her to breathe easily, the constant itching(this is caused from the high levels of bili in her blood stream) that is causing her to create new wounds on her skin daily, and that we would be able to keep her up and moving around enough to ward of pneumonia. I do think her UTI issues are resolving because she hasn't complained in a few days. She is also struggling in and around the area of where her g -tube is. We have requested a new script be written for a larger size for her, but have not heard anything yet. The swelling of her spleen and her abdomen has caused the button to no longer fit comfortably. It is very, very painful and the skin is very irritated. It oozes and bleeds daily and she is really struggling because of it. There are so many more issues I could share with you, but I think this list is enough for tonight. These are some of the most current and painful issues she is battling today.
Thank you all so very much for your prayers and your encouragement. The little acts of kindness bestowed upon us almost daily bless my heart so very much. We are doing our best to keep Ashley Kate as comfortable and as content as we can. Our hearts ache with each new physical battle she is forced to take on, but our hearts are always encouraged in those moments where we catch a little smile on her face or hear a small giggle escape. We all love her so, so much and do anything we can to bring her joy even if its for only a brief moment or two.