Tag Archives: tsc

4/27/17

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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!

Our Warrior Fatigues and Christmas Wish

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Bai’s new bed arrives tomorrow and we have to clear out the “institution” bed this evening to make room for it. It will be picked up Tuesday. Bob is in the garage making new runner boards for her beautiful white bead-board bed and touching it up with a fresh coat of paint. I am so excited to get the new bed tomorrow and now for a completely new reason.

When I say the bed in her room is bad, I mean not only it, but the mattress too. She has slept on fluff and comfort for years and this thing is a rock, even with her special memory foam topper on it.

I will also admit that we have been out and about a lot over the last week. Bai has spent more time in her wheelchair and in the Rocket then she typically does. Her back is paying for this toxic combination of events.

Today as we loaded her into Rocket to head to my, nephew, Oliver’s 3rd birthday, Isobel noticed Bai’s back first. Isobel! She caught a glimpse as I slid Bai into her seat. Can I just say that I really didn’t want to look. I held my breath. I fought back a choke of horror. Well, it is swollen again. A bubble, much like a blister, sits atop Bai’s protruding rods at the top of her spine AGAIN! What on earth!? Why does it keep doing this!? What is going on!? My heart is already in pieces over a multitude of other things going on with her, and life, why!????!?!?! We headed over and stayed at my sweet little nephew’s party for only a few moments, as Bob stayed in Rocket with Bai. We got to drop off and watch him open his gifts. We got to snag some yummy Piece of Cake Cupcakes and wearily returned to Rocket to get Bai home. I’m so upset. My brain goes to worse case. It always has. This can’t keep happening! She can’t be stuck in her bed! She can’t be trapped! For now, she is! We now watch and hover over her back. I tried to call her pediatrician’s office, but the doctor on call doesn’t know Bailynn. The nurse I spoke to was completely un-helpful! Bai has been back on Sirolimus now for a little over 2 weeks. We did labs and took urine in to culture and test Thursday, along with a CT of her lungs and other appointments. Still awaiting those results. The med will go….the tumors will grow….at least she won’t be trapped in MONSTER bed! At least she will get her Princess bed back and a new special foam/gel mattress to rest upon. At least.

I keep wondering why I can’t catch the Christmas cheer, the holiday feeling…I just can’t. It seems so empty. For me, pray for her. Pray my beautiful little girl doesn’t have to have surgery on her back. Pray my beautiful little girl doesn’t have to lay in her bed for weeks on end again, like this past summer. I want it to all go away. I want to steal her misery from her and endure it for her. I want to fix it. I’m helpless in this physically. My Christmas may find some joy, if Bai can. The tension in our house grows like a fungus when Bailynn is struggling. We put on our smiles and wear our warrior fatigues, but we crumble a little. Our hearts shed pieces. The exhaustion starts to show. It drains us like a dementor. It sucks the life and joy straight out of us. Our family has a fight like no other, but even we could use a little respite.

The word chisel rings in my head. Her orthopedic surgeon’s proclamation of what would have to be done if this goes south. The chisel on her spine to remove this rods. Chisel! It is a horrid word a horrid idea. Deal Lord, May no CHISEL touch my baby!

Our Christmas list has fallen to one request, Bai’s back to mend and heal swiftly – World Peace would be great too, but really, just Bai!

BEWARE!! ONLY CLICK IF YOU WANT TO SEE BAI’S BACK!!
–Bai’s Back 12:21:15 – GRAPHIC IMAGES!!!!!!

For Her.
Bobbi

UTI Wins Again

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Sunday I took a sample to the ER for another examination. Bailynn’s urine is STILL growing bacteria. They are going to grow it out and make sure she is taking the right antibiotic to treat it. This last round of antibiotic really upset her stomach and they are hoping to use a less harsh one.

So, no Tuberous Sclerosis medication still! Month 6. Please pray for her kidneys. I need to take her and have them scanned, but – I’m terrified to know. What does 6 months of not taking the meds to regulate the angiomyolipomas look like?

We will have the results in a few days on the urine. I will call Cincinnati once we do and schedule an appointment to have her looked at there.

Christmas is around the corner and I feel no cheer for it. I’m typically done shopping by now, I have a Thanksgiving food list made out and decor ideas in mind – nada. I just am not there. November seems to have snuck up on me and December seems closer than it should be. When did this year vanish? It’s a whirlwind and most of it, sad.

Maybe I’ll find cheer once Bai is feeling better. Maybe Christmas will get onto my radar. I’m hoping. I just need her to stop crying. I need her happy. The girls and I are home all day with this sad and unhappy girl. You’d think they’d be more effected, they aren’t. It’s normal for sissy to cry. It is normal for sissy to have yuckies (aka seizures). Other kids worry about texting, Facebook, bands, popularity, social status, fashion…..my girls, watch a different version of life. Isobel and Arwyn have helped me cath Bai. The twins will run and grab things for her, change her movie, and hand her toys. All the girls fight over who get to take Bai her meals. There is a different way of living here. There are different life lessons here. We could use some merriment. We could use some holiday magic.

For Her.
Bobbi

[ FOR THOSE OF YOU NEW TO THE BLOG: Angiomyolipomas are the most common benign tumour of the kidney and are composed of blood vessels, smooth muscle cells and fat cells. Angiomyolipomas are strongly associated with the genetic disease tuberous sclerosis, in which most individuals will have several angiomyolipomas affecting both kidneys. Bailynn has them in both kidneys. The largest is the size of a lime – why do they always compare things to food?!]

Zazzle

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I have designed a few things for Zazzle.com/BobbiHammonds. All designs can be placed onto different colored shirts and different shirt selections. I even have a mug. Here is my most favorite design I made today!!!!