For those who have missed my original status update earlier...
Here was our day yesterday:
Our daughter woke up this morning in more pain than when she went to bed last night. She's was in tears most of the day with her upper back getting worse as the day went on.
For several weeks she has had pain "off and on" in between her shoulder blades. This is the same pain she's had right after her surgery that would come and go. At all of her previous post op check ups, she had xrays and her surgeon believed it to be the crossbar equipment holding her two rods together in her thoracic area of the spine. She has two large rods, and two crossbar supports, (15 screws and 12 spinal fusions). Her spine is fused from T4 all the way down to S1. She was missing a few of her lower lumbar vertebra due to a congenital defect. This is why he had to fuse down to S1. She was told at post op that the equipment could begin to aggravate more and more after her a year or so post-op.
The shoulder blade pain has aggravated her off and on this past yr, and we have dealt with it as it has come. Recently, it has gotten increasingly worse, but she would still have times where it was feeling just fine. One of those times was Sun. She was feeling pretty good.
At her Feb appointment (1 yr post op appointment), she was cleared to do regular activities. I've been so way overprotective of her this past year, and honestly...if you had seen your daughter go through what I saw mine go through, you might be the same way! I had gotten to a point where I've just had to release this thing, and not hold so tightly to fear. It is her body, and she is responsible for her choices. We can't hover over her every minute, making sure she is doing what we think she should do, when the surgeon said she has no restrictions after a year. At some point, we have to let go.
Sunday she had a youth kick off event. I warned her about water-sports such as skiing, etc being unpredictable, but she decided to try the tubing. She mentioned how she had such fond memories of tubing on the lakes back home with our friends The Gillens. Well, she made a decision to go for it and do the tubing with youth. She "wiped out" off of the tube unexpectedly, and immediately afterwards she felt pain in her neck and midback. She knew something had happened to stir things up, but did not think it was anything worse than what she had been experiencing off and on. When I picked her up, she was really tired. She does get tired much easier since her surgery, and can usually gauge her physical limits pretty well. She was drained of energy when I picked her up at the church, but never let on how bad her back was feeling. So I thought she was just tired from the events of the day.
During choir practice Sun night (after the youth events), she laid on the cushioned love seats. When we got home, she went straight to rest. Then yesterday morning, she woke up and could not move her head side to side or up and down. All she could say is her neck and mid back were in a lot of pain...even into her ribs. She felt "not right", and had weird sensations going on in her limbs as well. She is tough, and doesn't complain. So for her to be literally in tears...we knew she was hurting and not feeling well.
We tried to get her an appointment early morning with her spinal surgeon. However, he was in surgery today, and the office was slammed with appointments. We could go to the emergency room, but she felt she could wait until tomorrow's appointment. (seriously we are better off waiting here at home than the Emergency Room!!!)
As the morning went on, she began to feel worse. So, we took her to her pediatrician. Her Dr there knew of her case, and they were the ones who originally discovered her scoliosis. Her Pediatrician examined her. Based on her evaluation she was concerned, told us she would definitely need xrays. The pediatrician then tried to get in touch with her surgeon, or a PA at the pediatric spine center. Again... giving the options of going to the ER, or waiting to have the xrays done at the pediatric spine center. IF they could get us worked in.
We waited at the G.P. office while they tried to work us in, but the pediatrician was not able get a hold of anyone. The office was so busy!! The PA finally called our pediatrician somewhere near 5pm, and decided to call her in some heavy duty pain meds to carry her until our 10 am appointment at the spine center (which is today).
We ultimately trust God. Right now, The Warrior is truly a Child. We will love her and support her through this. What we will NOT do is belabor this about her choice, put more guilt on her, or make her feel worse about it than she already does. It is what it is. She is a responsible young lady, and God will pull her through this.
We appreciate the love, support and prayers to those who have expressed caring thoughts on our Facebook or by phone. I'll update tomorrow afternoon. It may be later in the afternoon before I get a chance to. My apologies for not getting all of our family informed. I'll try to make calls tomorrow afternoon. Today has been a crazy day...and now I'm off to bed!