Over the last few weeks Justice has been fighting infections in all her pin sites. This, along with severe pain in her back and neck, has caused her to need a lot of heavy pain killers. We were also having to take her out of traction more and more to control this pain, infections and muscle spasms. Yesterday morning when the doctor call we decided the benefit we were getting from the traction were no longer out weighing the problems it was causing. Although it would have still been safe for her to have the spinal fusion with the infections, it was better if she didn't have them and without taking the halo off they were not going to even start clearing up. So during our phone call we decided to remove the halo ASAP.
This left us with two choices, to remove it in his office or go to the O.R. Removing it would only take about 10 min. but he could not give her anything for the pain if it was done in clinic. Option two was to be put under in the O.R. but Justice is now scared to death of the CARES Unit and considers all admissions there to be the same whether it's brain surgery or an MRI, if we're there she panics like it's a huge surgery. (I can't really blame her) But we chose the O.R. Unfortunately, Justice had her tube feeding all night so she had to wait 8 hours for them to put her under so that left 8 hours for her to panic.
In the end she did fine. The cleaned a lot of the infection out of the pin sites and they look and feel so much better. Hopefully we won't lose the progress we made over these last 6 weeks but if we do than God's will be done.
She tried so hard and did more than I could imagine a little girl could do. I am so proud of her. I wish she didn't have to have her spine fused on Monday. I wish I could just hug her and tell her she's safe and will never have to hurt like this again. When I've talked to doctors about her anxiety, they tell me to tell her these surgeries are making her better. I don't know if I can do that. What is better? To me, better implies this will stop and so far there's no end in site. When she was born they told us 3 months and she'll probably be much better. At 3 months she was recovering from huge surgeries. Then it was 1 year. Then 3 years. Then definitely by 5. That's when we made the switch from she'll GET better to she's GETTING better. Now she's been getting better for over 40 surgical procedures and 12 years. No, I can't tell her they're making her better. I just tell her they are trying to fix whatever it is they are currently working on. I want her to have hope but I never want her to think I misled her. She's a smart girl, she knows when they do a surgery it hurts, she will probably get worse before it heals and most likely there will be some side effect from it that was not expected but is actually worse then before the surgery.
I don't know...Jesus addressed how many times you should ask for forgiveness but I wish he would have said something about how many times a mother will have to plead with God for her child's life. Sometimes it's not about getting better, it's about staying alive.
(Monday, Jan. 16th, Justice will have her spine fused from T2 - L2 or maybe T3. Please keep her in your prayers)
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