Here is what has happened in the last few weeks since learning that Bai has to have her rods removed.
So, I last left you knowing that Bailynn’s rods are indeed infected and will have to be removed, but the surgeon wants to wait till at least March. This is to get through cold and flu season. I have been on the phone with lots of people trying to get this all worked out.
My first task was to get blood donations from my dad and bob’s dad (Bob and I don’t have her blood type). This step has proved to take days to accomplish. First, I was told that Bai’s blood type wasn’t on file. Ok, we can all giggle at this. How many surgeries has Bailynn had?!?!!!! She just had surgery last fall on her foot and somehow there is no blood type on file? Ok, here is the deal. There was a blood type on file, but all their files are being transferred to digital and the digital file didn’t have it, so they had to request the paper file. This or us go have her typed again, seriously!? Request the file! They did and now the paper work is being processed to get blood, but the complication now is that they don’t have an affiliated blood donation facility here and they don’t like using the red cross. Everything will fall into place, but my nerves are pretty well shot over all this.
My second task (did you see how long task one has been!) is to set a surgery date for March and pray we make it. We will be doing this sometime next week. The surgery request is being put in now. The surgery will most likely take place on a Monday, and more than likely in late March, depending on the surgeons schedule.
Here are our main concerns. Bai’s back still looks pretty awful. Though she has been on antibiotics now for over 2 weeks, her back is still angry and puffy, though not like before. She is also just not very happy. Her tummy gets messed up on these meds and her spirits get down when she has to lay more than normal. We have attempted a few outings and she has done ok, but even the cold gets her in a tizzy. Her little body, I’m sure, aches with these temps.
Now that the reality of all this is settling in, we think of more and more things that worry us. Bailynn could not sit in the wheelchair she is currently in, prior to this surgery. She required a lot of lateral support and specialty seating to sit, does that return, does that happen again!? She couldn’t sit in her shower chair prior to the rods, she couldn’t sit in her tomato chair prior to these rods, she couldn’t sit in the car prior to these rods – people, her spine was so curved she grew over 3″ in the surgery when the rods were placed! I try to tell myself that though she couldn’t do all those things, she could sit on the floor. That is one thing that has been hard to think about over the last 8 years. We have video and photos of her playing on the floor with her toys, crooked back, but playing! After the rods were placed and her pelvic bone tilted, no more. Could she possibly regain this skill with muscle strengthening?
Could her spine have indeed fussed and there be no further issues? I took to doing the one thing I tell others to NEVER do! I went and read accounts online of other people having their rods removed after 2 years all the way to 10 years after placement. Big mistake, but I will also say, best decision. While there were horror stories of hours and hours in surgery chipping away at bone that had looped around the rods, there was a resounding similarity between all the accounts I read, they all felt so much better after the rods were out. They went on and on about how painful they were, in, and how they felt like a robot. Some even expressed how much they would rather be twisted than to be straight again. Individuals that had had their rods in the longest had the least amount of returning scoliosis, though it was only shortly after surgery that they had posted their results. Those who had had rods in for 2 or less years, fell right back into their curvature. Bai’s scoliosis is a result of her left-side of brain being removed in 2001, and having a stroke in-vitro that resulted in her muscles being much weaker on the right side of her body. Now she hasn’t had to use those muscles to really compensate for side to side movement in years I wonder just what happens next. The rods have done all the work. My brain is screaming, my heart is screaming, my head hurts! Stop reading things! Stop thinking! Stop! I can’t. My brain is a run away train. Surgery will be happening before I blink and we will find out just were she stands afterwards, what will have to happen. How seating will be affected, how life may be altered. I need to stop trying to plan for the un-plannable, but I am such a planner. I want to have my i’s dotted and my t’s crossed, but I have this big empty uncertainty as to the next few months of life. Be patient with me and my rantings. My heart is aching. My thoughts stray. I feel like an emotional wreck, wearing a smile, trying to get to the next day.
Once the date is set, at least I can start planning for that to help my need a little.