Stupid Back – Stupid Rods

There are some things I simply don’t know how to share. So I’m going to just dive head first into this one.
Most of you have been with me since the beginning. If you look through the archives of Bailynn’s CaringBridge, you can watch our journey with metal rods in Bailynn’s back. We have never had it easy with them. They were suppose to fix the issues of her spin curvature crushing her lungs, crushing her heart, and impeding her growth, but instead put our life into a whirlwind of misery and countless surgeries. We watched Bailynn go to the brink of death and back. We had twins during the largest medical crisis that she ever had and today I’m updating because the DUMB THINGS! DON’T STOP! They have endlessly given her problems.
In my last update I talked about our trip to Disney, we will begin there….
For Bailynn, being out-and-about is a joy. It is also a lot of stress on her body to be constantly shifted and seated in her chair let alone rides that don’t accommodate her seating needs (thank goodness for the ones that allow her to remain in her chair). We noticed during our trip that Bailynn’s back, where her rods poke out to far, looked irritated and even ever-so-slightly bruised. We always take extra care to make sure Bailynn is in a thrown of cushions. We relocate pillows, memory foam, and small padding to and fro every seat Bailynn occupies. This is the norm for us. She constantly looks like she is in a state of pillow suspension. We had noticed that the spot on her back was not improving even when we got home. It has been in a state of extra ugly irritated inflamed skin. Then Bob flew to Michigan….So, this is when everything goes wrong around here. Bailynn’s seemingly irritated back went from irritated to a swollen bubble. Then from a swollen bubble to what looked like a boil (or as I remember from all those years ago, when this chronicling of her life began, infection). I have to say that fear, terror, horror are not strong enough words for what I have felt over the last few days. Remember the brink? I saw her there. I saw her so lethargic running a 106 fever thinking (in my head knowing) this was the end. By the grace of God, it wasn’t. I still believe nothing short of a miracle saved her then. Her pedicatirion caught her allergy to Penicillin and saved her life. Everything turned around, despite her rods coming through her back and her having to have them replaced months later. It was a blessing of the largest magnitude. I had already sat Isobel and Arwyn down and explained to them that Sissy was going to heaven and we prayed. They saw that power. They saw her come back to us. Yesterday when I had to explain to them that we were going to Indy in a rush, Isobel and Arwyn wept. THEY LIVED THIS! They remember with more clarity than I realized. Arwyn was 3. Isobel was 5. The twins are graced with infancy and no memory of this time in our lives. Our dark ages. So, we hit the road and the whelp grew. I made it to Indy in 3 hours and 25 mins. That is amazing time! Really! (fyi I have 5 girls and they love LOVE LOVE to – Pee!). By the time we reached Indy it had doubled in size and darkened in color. Her Doctor (orthopedic surgeon) thinks it’s a bursa (a bruised inflamed area with fluid building on the backside) – he doesn’t know if it is infected. He can’t test to see if it is infected, cause the test could intern make it infected. So we are doing antibiotics first. We came home. We were told if it pops and is pussy, she will have to have rods removed and to hop in the car back to Indy. If it is yellow liquid, we are ok. We have to keep it cool and cushioned (this can’t happen on the road home – it is near impossible). It could be weeks before it resolves. We also have to pray the rods don’t become exposed when it does pop – removal in this scenario as well. Until it resolves she can not enjoy the hot tub and no hot baths (we don’t do baths for her anyway, so easy). She is also suppose to have as much time not sitting to keep pressure off it (again, long car ride ahead of us). Once we got home, the place on her back was three times the size it was in the morning. The skin already breaking down. She had her first antibiotic dose at 6pm, again at midnight, and 6 am. She slept all night with a cool pack on it. This morning, it has popped. It does not, right now, appear to be puss. It is however 3 times the size it was when she went to bed. She isn’t running a fever. She doesn’t seem lethargic, just uncomfortable. Pray it is nothing and the puss doesn’t pop it’s evil little head out. Pray her rods remain tucked under her skin where they belong. Please. Cause as her mom, it’s terrifying. This life Bob and I have trudged through with her, is terrifying. How many people constantly see the thread of life strung so tightly poised to snap. There is so much restraint in what I post in my journals about her and on my Facebook page. I struggle with the balance of oversharing and upsetting others. I have my inner struggle with other people’s children and their milestones. I don’t mean it in a mean way, my heart just simply aches for what-could-of-been, though my what-is is pretty great. My life is not graduation caps and playing in parks for Bailynn. It’s medication dosages, doctors, seizures and terror. It’s the idea of death and surviving my child. Thinking of life without her. How does that translate to other people? Don’t feel sorrow for her. Don’t feel like we haven’t excepted this and found the joy in every journey, even the tear filled ones. Life in the Hammonds’ home is a constant lesson – an endless reminder of how precious our time is here. Live it fully. Live it fully for those who can’t…cause they have families that wish they could and see lives being wasted away, precious God given lives. Live for Bailynn – we do. Too many tears and too much heart ache this morning to re-read for spelling errors. I will review this later, for now I post in it’s more primitive form. Love her – Pray for her. We can’t watch her go through surgery on her back again. At this moment I scream – IT’S UNFAIR. Life is unfair.

For Her.

If you really really really want to see the pics. I am posting them here as a link. Please, if you are of weak composition, DO NOT CLICK! I have warned you. I have had many ask to see, so I am honoring that request. I know it is out of love and curiosity. This is my life. These are the things I feel would frighten off the strongest along with the weakest, so
Click This ->Bailynn’s Back June 2015 to see our journey this week with Bai’s back. These images are not easy to look at.