Collagen

It has taken me a bit to sit down and write this update because I simply didn’t want to jinx it!

Collagen went in 2 weeks ago this Friday. My initial reaction was good, as was Bob’s and the plastic surgeon. The collagen injection went well, the overall appearance of the rods was diminished drastically and obvious cushioning was achieved. That did dissipate a lot over the last few days. The rods are quite predominate still, but overall the procedure did work. Saying that, we have to do this 3 more times, 1 a month for the next 3 months, to truly achieve the level of cushioning that Bailynn is going to require for these rods. Once we get there, the collagen should last for about 2 years.

We are still doing everything we can to keep the rods from getting too much pressure on them. We are still in a holding pattern waiting to see how this all plays out. We are still questioning, who wouldn’t be!

For now it is good news. I am trying to be happy, but my heart aches when I look at her back. My iPad is filled with photographs documenting her back over the last few weeks. Our lives are consumed by this….again.

The next collagen injection is June 20th. Please keep these in your prayers. Our insurance, as of right now, is denying these claims. I am hoping the surgeons are making a compelling plea as to why this is now required. Hopefully this doesn’t result in a fight with the insurance company. They love to be difficult.

We also travel back up to Indy next week for the neurosurgeon to look at the healing of the incision, which has healed beautifully, despite the horrific rod protrusion.

For Her.
BOBBI

The Reaction

Bailynn has had some kind of pressure point irritation or allergic reaction on her back. I really believe it is due to the combination of adhesive bandaging (which she always has issue with), neosporin, and pressure on the new rods and their placement.  She now has large irritation points on her back right where the new rods protrude the most.

We noticed this weekend and  immediately removed all bandaging. Her skin looked better within a few hours of removing them, but it is in such a bad location.
We have resolved to go bandage free now with a routine of antibacterial cream.

I sent pics to her pediatrician yesterday morning, because she is the closest and typically the most helpful in these situations. She said we really needed to share the images with the indy surgeons, which we were fine with. I then paged the plastic surgeon and spoke to him yesterday afternoon. He was upset the pics didn’t come to him first. We don’t panic over this stuff. We have literally seen it all. WE wanted to verify it was worth worrying about FIRST. I hate this drive. This is all very upsetting for Bob and I. We have lived a nightmare with this back, one that we can not truly express to anyone who hasn’t been in these 4 walls. Even the girls could see the tension in us as we discovered these things on her back. We have rolled her, cleaned her, re-bandaged her, kept her on cloud fluff, watched her begin to blow raspberries again, watched her appetite come back with a vengeance. She is ravenous. Then, we watched it all feel like it was falling apart. The weight of 9 years of back surgeries. Infections. Rods slipping. Vertebrate breaking. Metal peeping out of her skin. Rods removed. Rods replaced. Infection. Rods removed. Rods…..replaced. Did we do the right thing? The pictures don’t lie, but as I sat with her this weekend furious at myself, I began to hate me. I began to regret every decision made in the last 9 years. I began to have a breakdown of dismay and sorrow. I can’t explain. I felt so betrayed. I felt so helpless. I hate helpless. That is the last freaking thing I try to be!  Sleep didn’t come this weekend. Last night was my first night to feel like sleep was uninterrupted by dreams filled with regret. Bai sat with Bob and I as we watched a show last night and she kept begging her daddy to refill her cup, which he did. I think this moment, the 3 of us alone doing something normal and routine, helped my brain rest.

I would post pictures, but I feel that some things can be very upsetting to see for a large number of people, but know that she has what looks like friction burns about midway down her back, in the middle, framing her spine. My heart has exploded with guilt over it. These things were suppose to be in the past. This was suppose to be the answer, but we never get a moment to breath. We were going to take her back to Indy today for them to look at it, but the plastic surgeon wasn’t available until tomorrow, so we point north tomorrow.

Pray for her. This can’t be the new norm. The new location of the rods can not result in placement issues for her. She can’t suffer on account of them. She simply can’t.

For Her.
Bobbi

*I HATE SCOLIOSIS, just incase you didn’t know!