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

It’s her birthday! The Options. 

We drove to Indy yesterday to let the surgeons get a good look at her back. The first thing they booth said was that it looked better in person than in the photographs, something I tried to relay, but it is hard when we live in a visual world. Photographs can often askew coloring and don’t give a great perspective of size. 

The rods are protruding. This is the issues. They are protruding in a region of her back that takes a lot of pressure while sitting or laying. She is skinny. This is a fact. This is fact that EVERYONE knew going into this procedure. This was why we chose this team of doctors. She is skinny, she needs rods, can you do this? The answer was yes, and then some. 

The first thing they jump to is nutrition. I can not tell you how much this enrages me. I can not express to you the deep hurt it gives me that for years and years and years and years and years, we are accused of not feeding her to the level she needs to be fed. Bull. JUST BULL! This child, throughout her 17 years, has never had an issue with eating. She may not walk, she may not talk, she may not do a lot of flipping things, but she EATS! She EATS!!!!!! She gobbled down formula, jar after jar of baby food, she inhaled pureed foods, and boost, she has at more calories in a day than what I believe most body builders eat, and still looks like a run way model minus 100 pounds. She is SKINNY, but this kids loves food. She loves to eat so fast you wonder if she is breathing in-between gulps. She gets angry with you if you try to hold her cup. She claws your arm if the food is gone and she wants more. She screams from her room if she is laying there hungry. She tells us, in her way, FEED ME!! I want to stamp my feet. Punch the sky. Yell at the top of my lungs! I want these doctors to hear us when we tell them how much she eats. We have provided caloric intake, we have increased caloric intake, to the absurd levels of 4000 calories a day, when her vitamin levels still came back low, despite her intake of 200% (and in some cases more) of the low vitamins a day. This is just insane. 

I have joked about creating her a youtube channel and calling it “Watch Bailynn Eat”. Every day I would video her eating every cup full. Every morsel of food logged. Every gulp accounted for. This way, every time a doctor accused us of not providing her with the nutrition she needed I could refer them to “Watch Bailynn Eat”. 

Then the bring up a feeding tube! Are you really going there?! Are you kidding me!? Bob and I’s first question is, “Does that somehow make it stick to her body differently?” Does a feeding tube have magic powers we are not aware of when it comes to intake? NOPE! BIG FAT – NOPE!!! Sorry for ranting people, but this is just the crazy stuff we have to deal with. I will note, I understand that there are families out there that profess to feed their children and don’t. There are people that lie to these doctors and have burnt them in parent doctor relationships. I get that, but for the love of GOD, our family cares for Bai like no other. She has, for every day of her 17 years, been loved, pampered, fed, cleaned, and cared for above and beyond. Please stop belittling my abilities. Please stop trying to classify us with no real knowledge of us as people or as parents. Please stop. I plead with every medical staff professional in the world, not all of us are failing. Not all of us are struggling. 

Now let me also state, if I could get her to gain weight, like 10lbs, that would not mean that 10lbs of fat would magically appear on her back. Weight/fat whatever doesn’t go where you tell it to. Heck, if we could tell our fat where to be placed, we’d have a lot happier people in the world. It’s just silly all the way around! 

Ok, deep breath, again, they knew she was SKINNY, before they placed these rods. This is not a new development. This didn’t happen last week. Now, we are dealing with it like it is a new issue. Now we are looking for solutions to problems we believed was under control. 

Here is option 1. 

Option 1 is inject collagen around the rod protrusions, on each side of her back, to try to fill in and cushion the skin. Ok. Collagen is much like a botox injection when it comes to longevity (it is obviously nothing like botox itself). Collagen is a temporary fix and would have to be done multiple times as it dissipates. This is however the least invasive option we discussed yesterday and therefor our first pick. We will do this for the first time in a week or 2 to see if it works. This will have to be done in the OR (operating room) and she will have to stay overnight in the hospital. This must work. 

AHH! I forgot! Bai has gained 5lbs since surgery!!! Ok, so that is another – she eats! moment. The straightness of her spine provides her with more comfort in eating. Take that doubter doctors! Ok, back to the options! 

Option 2.

Transplant fat. No lie, we have teased about this for years and apparently it can actually be done! SHUT THE DOOR!!! The issue with this option, is they’d have to take fat from somewhere else and put it there. Uh, she doesn’t have any fat anywhere else. ISSUE. So, this option looks fabulous, but we need fat. This also requires cutting her, exposing the rods, increasing the risk of infection, and recovery time. This option if viable if option 1 doesn’t work, but I would still like to avoid this option. 

Option 3.

An implant, much like a breast implant, but we are not putting bumbles on her back. It would be more rectangular in shape. It would have an open port area for them to deflate and inflate it at will. It would involved the same risk factors as option 2 plus the now added issues that could arise with a port. I don’t like this option in the least. This would be a do or die for me to choose. The open port alone is a no-no for me. Her skin easily breaks down. She is high risk for infection. She takes medications (when she can), that lower her immunity and healing. This is just a nope. 

So we need to put a little weight on her, yes, we agree. They need to understand that that most likely will not solve this issue. Looking into nutritional factors, with people that grow tumors in their bodies, she is always going to struggle with vitamin levels. Her body is constantly fighting inflammation, tumor growth, and her body is constantly trying to heal itself from what it does to its self. These rods however, sticking out and causing issue already, are not the fault of her diet. The placement and protrusion, would be the same on any of our girl’s backs. The difference is the way Bai holds her body, lives her life and fights. She is a challenge. She is Bailynn Drew. Did they not read the memo!? 

It is her birthday!! HAPPY 17th to the most challengingly wonderful little girl I know. How far we have gone. How far we have come. How far we have yet to go. 

For Her (on her Birthday!)

Bobbi

4/27/17

Before – After

Bailynn had an extremely good day yesterday, and we are starting today well.

She got all of her IV ports removed over the course of the day.
I got to see scans of her back and compare them to the previous scans.
She ate better, still not full eating, but better.
She sat up again for a long period of time.
img_7229I got to wash her hair with a shower cap thingy, that really isn’t the greatest, but got most of the dried up blood out of her hair. Her hair now looks greasy. Someone needs to invent something new for this.
Her dressing was changed around 3:30pm (indy time) yesterday, by plastics. He was impressed with how well her wound is healing – she does that – and I got to really see it. It is staples from neck to butt. It is a significant amount of staples from neck to butt. I will say that despite the overwhelming size and the little strips of metal littering her skin, it looks really good. I will be anxious to see how it looks iimg_7231n 6-8 weeks when we have to return to have the staples removed in the OR.
Then she got to put on fresh clothes – with pants! This is a huge step to feeling normal again.

This morning she got one of her back drains removed. The neurosurgeon, Team Unicorn Member, warned that she would not be happy, as they had to remove a stitch, pull out a huge tube, and then restitch her skin where it was, with nothing to numb the skin. Bai didn’t even flinch. Not a twitch. Not a moan. She just tried to shield her eyes from the bright lights the doctor had turned on. One more drain to go. It has been dry the last 2 times they have came to empty it. It will come out tomorrow morning I am sure.

I asked the Unicorn Neurosurgeon yesterday, while looking at the back films, if we could shoot for the weekend to go home and he said YES!!! YAY! He also said, though he knew we had told him she was quite the quick healer, but that he’d never expected her bounce back as quickly as she is. Bailynn is KING OF THE HOSPITAL (if you are Bones fan, you get it 🙂 ). Or in her case, QUEEN! She hadn’t had morphine since early Tuesday morning, until they changed the dressing yesterday. She is taking valium and lortab orally, and sometimeimg_7230s doesn’t need it till well past it time to be administered, I’ve been letting her sleep rather than waking her for doses.

She doesn’t like being moved a lot, but once rotated to a new position or sat up, she is fine.

Over all we have almost all our checklist checked to be able to go home. We’ve done this so many times, this list is ingrained in our brains. She needs to poo, she needs to not be on IV meds, she needs to be able to sit and tolerate it, she needs to eat, and she needs to not be connected to anything. All we have left is the back drain, then our checklist is complete! Our goal day is Saturday. I’d like to get her home and in her bed and have Bob have Sunday with us before he returns to work. She will do so much better at home, she always does. I swear she keeps her eyes pinched tightly closed here to pretend she isn’t here at all. Me too. These hospital sleeping accommodations are for the birds! Backless, boneless birds! UGH.
Pray for Saturday to be our day!

For Her.
Bobbi

UPDATE!!! DR THINKS SHE CAN GO HOME TOMORROW!!!! JAILBREAK!