June seems like a lifetime ago already. It is like a foggy month of Bailynn trapped in her bed, watching her back, holding our breath, and praying for her to heal. We made it through. Seven long weeks of care and delicacy, all felt victorious. Despite her ongoing issues with urinary tract infections, we really thought we had won. We had made it! Then Christmas nightmare came and monster bed. The back flared its evil head and we were knocked down a few notches. Did we think we had lost the war at this point? No! Still no! Antibiotics in hand, the back improved and Bai moved through the last few weeks of life ok, delicately treated, but ok. That is until the medication ran out and the truth was made. This is indeed an infection in her back. We have lost. She has lost. The battle is over. Her rods will have to be removed. I have cried so many tears today. My heart is in a zillion little pieces. Her orthopedic surgeon doesn’t want to cut her, he knows her, he knows how little her body is and how hard this is going to be! He has been with us throughout this journey. Doesn’t matter, this is the only option now.
Step one will be to put Bai on a longer term antibiotic to treat the infection and try to get the current inflammation to go back away. Step two will be to try and get her to March before we do this surgery. Why? RSV, Pneumonia, Flu. These are rampant in the hospitals right now and Bailynn is going to have a hard enough time surviving having rods, that have been on her spin for 7 years, removed, with compromised kidney function, a delicate frame, and over all puniness. Lung infections need to be removed from this equation. We have to get her to March. Pray for her – pray for us – pray for health and healing and MAKING IT TO MARCH!
The surgery will last 2-3 hours. She will be in the hospital a minimum of 3 days (praise God, and pray for this small Hospital Prison stent – hopefully we can achieve optimum health in 3 days to get to GO HOME!).
This all seems so simple, but the hardest part is her surviving and for them to not damage her spin. Remember, she is living on borrowed time. Time we were assured, years ago, we wouldn’t get. She is suppose to have her sweet 16 this year. We were suppose to go to the beach this year. We were going to make up for weeks lost last summer by swimming day in and day out this year. Now, who knows. Her back will be so weak. Her sitting situation? I don’t know. Her healing time? Months. Years ago when we started the path with rods, rods breaking on part of her spin, rods getting infected, STAPH infection, PICC lines, rods coming through her skin, rods removal, waiting, rod replacement surgery and then finally recovery, we still only ended with a shadow of the little girl we knew on the other end. Noises she had made, faces she had mimicked – gone. What will go this time? Will this one surgery mean healing or fighting more? It is a yucky, cold, snowy, icy day outside. My least favorite kind and I am hanging on hope that I get summer with her. I am terrified to think of life being stolen from her. Every choice we have made has been one of reason and choice based on need. Quality over quantity is a big thing around here. Right now, there is no quality. She is continually sick, hurting and stuck in her bed.
I will be 100% honest, I am just not handling this well. I am tough. I cry when my heart rips open and breaks away more pieces, but I am over all a tough shell. This has me shaking, cold to the core and terrified. Having bronchitis right now isn’t helping either. I am so tired and I just want my little girl to be better! Just better! Better doesn’t mean no seizures, walking, or talking. Better = happy and healthy. Better = smiles and playing. Better = getting to see her laugh at things. I just want her Better! I want her sweet 16. I want the years and days that they said I couldn’t have. I want them! I don’t care if it is borrowed or not. I just love her so much. When I tell people who have never met me that I have 5 kids and they stare at me like I have horns, I explain what love is. Love is being handed a little baby and being told all the things that are wrong and still seeing all the things that are right. Love is seeing a moment of learning over a moment of loss. Love was being thrusted into parenthood and taking it head on. Bob and I never looked back. Bob and I never said never. We kept being a family. We kept having children. We kept smiling. WE KEEP SMILING! Because of love and seeing the big picture. Our family is whole because of someone who others see as broken. My children are amazing humans because they see the challenges life actually gives. There are no petty pity parties here.
Ok, Chin up…..tears wiped, let’s get her to March folks! Then, let’s get her to her sweet 16, cause there will be fanfare and PINWHEELS!!