Friday, October 11, 2013


Where do I start? I woke up this morning with a solid decision. Completely at peace with it. Along with feeling like I know what's right for right now, I passed the computer screen before we headed out and I saw that sign. It had been confirmed. I was not going to stop. Not yet, and let me tell you why. If the worst is behind us and it would be smooth sailing from here on out, I would never know. Her lung would continue to be squished and that would be a terrible feel like you are having a hard time getting air in. Also, because of the severe curve, her ribcage is protruding, and although I change her position often, that body part poking out gets irritated quickly and she can get bed sores there. So with all of my Praying and weighing, I realized that having a procedure every 6 months and taking pain meds for a couple days was better than living the rest of her life with the previously mentioned issues. My "sign" of confirmation was from Jim's cousin, on my FB page. And it was quite literally a sign. It was an image that mentions how the miracle happens right when you are ready to give up, and it says not to quit. That was awesome. 

Things weren't that simple however. When I changed her wound vacation bandage on Wednesday night, I knew it looked bad. I even told Jim that it looks like there is something in her wound that I could grab with tweezers. I took pictures and put a new dressing on. After surgery today, I spoke to her surgeon, and he tells me that the rod had completely gone through the skin. I go back to my phone and look at the pictures and sure enough, as clear as day, right there popping out of her open wound is a black and titanium rod. HOW DID I NOT REALIZE THAT IS WHAT I WAS LOOKING AT?!! Its so obvious in the pictures. This blows my mind. So looking back, this is exactly what was happening a month ago with that rod in the other area. It would have broken through the skin as well had her surgeon not been on the ball and got her right in. Her surgeon is awesome, but for whatever reason, the VEPTR is not compatible with my girls body. It breaks my heart through and through to even imagine what that felt like. She was acting out in pain that whole weekend, but I could not figure out what was hurting her until her wound opened, and even then, just thought it was a blister that popped, definitely not her metal rod pushing through her sweet baby skin, ugh! That's just heart sickening. Needless to say, those rods will never go back into her. But I know I have other options. I will find those out and make the best choice for her. For now, she is packed with an antibiotic filled cement spacer and beads. Thank you all so very much for all of the love and Prayers that have been flowing into our family. It humbles me to see outpouring from people across the States. People I do not know are reaching out to me in love and Prayer, and it has most definitely restored my Faith in humanity. I will respond to each of you  when we are home and settled. But again, thank you. 


aimee said...

Sending lots of love and prayers.

Connie B. said...

Thinking of you Sarah! I am so glad you found your sign and I think you made the right decision. I hope that beautiful Miss Kira feels better soon! Much love and hugs!