We spent our weekend in Dallas watching Allison Brooke's volleyball team take another impressive 2nd place. It is their second tournament and in both they have made it all the way to the Championship game. She is learning so much about the game and having a really great time. We are so proud of her and we are really enjoying watching her play the game. Club volleyball rocks!
I shared that Ashley Kate had gotten a really nasty cold last week. She woke up with it Thursday morning and it lingers still. Not improving much at all. We finally received orders last week to draw cultures from her line to see if it had cleared from the line infection we were treating her for. She was on coverage from the placement of the line for the next two weeks. It took us a full week to get the orders since our lab had a rule change and refused to accept them from an out of state physician. Lots of red tape, but finally orders were sent and we drew the cultures Thursday morning. 24 hours later no growth on the cultures. By Friday evening we were in Dallas with what we assumed was just a cold since she had a cough, runny nose, etc. Ash struggled through the night although all vitals were stable. Heart rate a little elevated, low grade fever, oxygen sats at 98%, respirations low 40's, blood pressures normal. I felt like something wasn't right, but still cultures were clear. She was vomiting, but Ashley is always vomiting since her ex-plant.
Dave and I were suspicious that her line was infected, but without growth there is no proof and so you continue on doing the best you can until something grows. We called early Saturday morning and the pathologist confirmed our suspicions but had just created the slides and had not yet looked at them to see what was there. A few minutes later she called with the news of a gram positive. She really believed it was a contaminate, but we assured her Ash was symptomatic and that we felt an infection was indeed there. When you have a central line any fever whether low or not points to infection. As does vomiting even though it is the norm for our Ashley. We just know her and we know she wasn't right. It was a little more than a cold by Saturday.
So the title of this post is grateful. What you may be wondering am I exactly grateful for in this case? A sick baby, a central line infection, a head and chest cold. None of that sounds good does it? Its not, but as I walked through this stressful situation I found many things to be grateful for this weekend. First and foremost I was grateful for gram positives. Gram positives means we can treat her at home. Gram negatives means they make us automatically admit her until cultures come back clear. The LAST thing I wanted to do was admit Ash. So I was so grateful to hear the word positive. Secondly I was grateful that Dave and I have become seasoned, confident, care takers of our girl. We didn't need to panic. We know her line is a last result and we know how serious this is for her and for us, but still we have confidence that we are equipped to take care of her. I won't say we weren't the most stressed out parents in the entire sports complex this weekend on the inside, but on the outside we were holding it together as we worked the phones to get the meds and supplies needed to take care of our youngest daughter while our oldest daughter was able to maintain her normal schedule. Thirdly I was so grateful our transplant team trusted us to take care of her locally and they made the calls to our local physician in Longview to get the ball rolling for us. So grateful! Our Longview physician did a great job at quickly getting orders to our home health in Houston for us. Our team in Houston called the local Dallas branch and they actually drove IV antibiotics to our RV there in the parking lot of the sports complex. We learned of positive cultures around 9am and by 4 pm her first dose of vanc was infusing. I was so grateful! So grateful!
Had we taken Ash to a local ER or driven her home to Longview or to Shreveport there is no way she would have had IV meds running by 4pm. The fastest way to care for her infection was to get the meds to us and get them going. Wow, sometimes God still amazes me. Even after all He has done over the last 5 years in our lives I still stand back and look at His direct work in the life of Ashley Kate and am rendered speechless.
This morning I see improvement in her infection like symptoms. Her cold on the other hand is getting worse. She is sick. Not feeling well at all. Her smiles have faded away and she is overall pretty miserable. To see her struggle is so heartbreaking for me. A cold for a transplant patient is so much more than just a normal cold. It can linger for weeks and be so, so awful. This one seems pretty nasty so far.
My big kids are amazing. Able to keep it together when things around them start to spin out of their control. Out of our control. They just keep on keeping on even when life gets crazy for Ashley Kate. Allie walked onto that court as if all was well in her world even though on the inside she was worried that once she came off of it that Ashley Kate wouldn't be there. Not a single person on her team is aware of the frailty of the life of her baby sister and the constant threat of losing her that Allie lives with. She just holds it together. There were a few hours in the in between that one of our teams was telling us to take her to the ER at Children's in Dallas. Dave and I knew better than to do such a thing. If it was at all possible we were going to avoid that scenario. If they wanted her admitted we were going to drive her back to Longview. The ER at Dallas Children's is NO place for a transplant patient. We've been there many, many times when Ashley Kate was a baby and her team of physicians were located in Dallas. Its a nightmare for any parent to be in that situation, but an even bigger nightmare for parents of a very complicated transplant patient. The team that was advising us to go even mentioned that we would have to convince them not to pull her central line. Honestly it would have been an awful fight to get the residents there to listen to us, trust us, and hand us over to an attending in a timely manner. Its how it works. Trust me, we've walked this road for a long, long time. My fellow transplant families in the Dallas area would agree. So my gratitude toward our physician here in Longview is more than words can even describe. He was so awesome and spared Ash from enduring a lot of unnecessary this weekend.
There are times in our life, especially lately, that I feel as though we live on a different planet than the rest of the world around us. I sit in a sea of faces, like at the volleyball tournament, appearing to be concentrating on nothing more than my 12 year old playing ball. When in reality I am consumed on the inside with thoughts of where the next few minutes will be taking us. I feel as though I am a foreigner in a land where no one else speaks my language. My heart is heavy with the weight of her life and death and yet I sit around listening to such silliness come from the hearts of my peers. I'm not judging, please don't mistake my words. I'm simply saying that I feel out of place 99% of the time. Like its me who has the problem not any of those around me. Its such an odd place to be. I'm learning to live in this new land. I'm learning how to cope with everyday life while the bigger issues of life and death looms over my head.
On the drive home last night as our 3 kids slept in the car Dave and I tried to discuss this new place we have found ourselves in. I've been thinking about our conversation this morning and what stands out the most is the advice my husband gave to me. "Try hard to concentrate on today, the now, and enjoy every minute of it. Don't allow yourself to think about the tomorrows. The future is not where our focus needs to be at this time." He is so wise. Today we are home. Today we are raising our 3 kids together. Today she is alive. Today she is safe. Today holds so much for us to enjoy. Today is enough. The tomorrows are going to be here soon enough. Keep my eyes focused on our today and don't allow anything to steal a moment of it from us.
This post got really long. So sorry about that. If your still here reading this sentence then I'm going to say thank you for putting up with all of that. More than anything I just wanted to say I was grateful for the work God did in our lives this weekend and for the provisions He made to take care of our Ashley. She's sick, but she's home sick and not in a hospital an hour, 2 hours, or 14 hours away from her family.
I'm looking forward to clearing this infection, this cold resolving, and our happy Ashley returning to us. For today though she's not feeling well and is tucked under blankets in the play room watching Thomas the Train and Dinosaur movies.
Thank you for your presence and for your prayers. Among it all my heart is still grateful.