This day has played out so many different ways in my head. My dreams have been filled with fear, horror, and despair, but the reality, unbelievable resilience from a 15 year old girl. Her frail little frame, seemingly weak, filled with the strength of a mighty hero. Bailynn doesn’t cease to impress or inspire me. How can I fail when she tries so hard? How can I ever complain when she suffers so often? How can I not do when she does all she can? I may be her advocate, but she is definitely my rock. My grounding inspiration of fortitude. I will not fail her. We will not fail her.
She came out of surgery in record time. So fast I was worried. What had gone wrong? Brain going to the worst places! The surgery went off without a hitch! No bone wrapped around the rods, she only lost 100cc’s of blood. The infection was localized to the top portion of the rods inside the hooks that clamped over her vertebrae. The dural tear, that has inconvenienced her in the way of having to stay flat on her back, was only really due to the mass amounts of scar tissue in the middle section of her back. Prior to having all these rod placement, repair, removal, placement, and removal surgeries, Bai had a fatty lipoma removed from her spine twice. Her poor little back has been cut on so much, so the compromised area was doomed a smidgen. The tears were repaired with a dural glue. In 24 hours, if there is no swelling, from spinal fluid leakage, she can get up and move more. If there is, she will have to lay flat on her back for another 24 hours. This was our life over the last few months anyway, Bai in her bed, flat on her back, so she won’t be that upset by the inconvenience. This just may mean we stay locked in hospital prison 1 extra day. That’s it. The 1 and only complication and it is not much of anything.
Her surgeon says her spine looks pretty ridged. He doesn’t think she will have side to side scoliosis issues again, but the weakness in her middle spin is a cause for concern. He has recommended a new soft clamshell for her to have made and fitted at home. FYI, Bai HATES these things!!! But, she needs to heal and make that part strong, so we will torment her with one.
An open letter to:
STAY THE FLIP AWAY FROM MY KID! I am over you! You have terrorized her back! You have put her through countless horrible surgeries! You have made me love swim shirts and hate the way people look at my beautiful daughter’s back! You have made our life a living nightmare! You have taken a little girl, who suffers enough, and plagued her! You evil devil thing! So stay away! Go away! Don’t mess with Bailynn anymore! WE HAVE A MILLION PRAYER WARRIORS ON OUR SIDE! You have no power here anymore!
She is lying in the bed next me as I type. The room is dark, her sister’s and daddy back at the hotel. She is grinding her teeth – to make me crazy (thank you! for making me crazy Bai) – and rattling her toys. She hasn’t cried or whimpered. Not ONCE! She has a massive incision down her back and she acts like it is just another day in this world. How sad. How beautiful. How Bailynn.
I haven’t got to see the incision, but I will in just a few hours when the nurse has to check it. The main issue, as of right now, is that she needs to pee. She hasn’t went since surgery, at all, and she has been pumped full of fluids and drank 3 cups full. I don’t want to have to cath her tonight. It will just irritate her UTI. Please say a prayer the Bai pees. haha. Weirdest prayer request to date!
For us. We can all sleep now (maybe). The worry and fear swept away. My heart fracturing after this week and watching her in such misery, watching seizures, watching her back, all over, done. It only took a few short hours to changed her future. Today, we have given it our all and made it to the other side.
Tomorrow morning I take Lila to Riley (since we are already here) to have a tooth removed. Lila has a fuzed tooth, with an extra large root system, that must be removed for her big girl tooth to come through. An easy procedure after today.
Such peace tonight. It is over, recovery thankfully has begun.