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!

The Appointment Opening

It never happens that we have a trip to Indy, to see one of Bai’s specialists, and another calls to see if we could perhaps come on that exact day too. No. It typically goes, I made Bai 2 appointments for the same day – woohoo!!! – and 2 days before said appointments, one doctor can’t see Bailynn any more. This is how it goes! So Monday, when Bai’s neurosurgeon’s office called and happened to have a magic appointment at 3 o’clock on the same day that we had ortho at 9 am – I was speechless. Luck had shimmered through a bit.

I happily excepted the appointment and proceed to tell everyone I could!  This is like hitting the lottery to me! For Real!

We loaded Rocket and head out at the crisp hour of 4am. We hit Indy and embarked on our first appointment. We knew this was going to be bad. We knew things were not going our way. We knew Bai’s back was bad. WE knew. WE KNEW. However, it is always a shock when, “your child needs surgery,” AGAIN!!! is said.
Bai’s curve – forward – has went from 61 degrees in September to 80 on Tuesday. Her body is caving in on its self. AGAIN!!!! SCREAM!! BRAIN POPS!!! SCREAM!! All in my head of course. I keep my cool or cry – crying typically cause I am so angry at all this!
I’m an angry crier – it’s the worst.

Ok, so Bai needs surgery.

When, April. How – horribly.

No really HORRIBLY!!! This time they have to go in through her side, move her diaphragm, remove a rib and make bone grafts out of it. Shim her spine with the bone grafts. Put the hardware on the inside (ok, this part I’m cool with. This makes sense for skinny minnie Bailynn!). The hardware will never poke through this way, however, this is an incredibly invasive surgery. It requires chest drainage after surgery, a vent, more nights in ICU, a longer period in germ land, oh, I mean the hospital. UGH!
Surgery………….AHHHHHHHHHHHHHHHHHHH!!!!!!!!

Next we take the girls to the children’s museum in Indy and try to let our brains soak up what was said, what has to happen, and that we are going to allow this. She needs this. This is, however awful we think, necessary.

We then head to our unicorn appointment. We met with the doctor, that 15 years ago, last Sept 20th, removed Bailynn’s brain and for years was her biggest advocate. We had slipped from seeing her in the last few years as we focused on Bai’s kidneys. We didn’t mean to lose touch, we looked for help and doctors elsewhere in this time. We searched for clinics that would look at Bailynn’s Tuberous Sclerosis. That would then treat her TS and would focus on her. We were not getting that from every clinic at Riley, but a huge majority of Bai’s specialists are still at Riley.

Her neurosurgeon just didn’t understand. Riley is a top notch facility, agreed, but. Our neurologist was not focusing on TS, just epilepsy. Our urologist and nephrologists seemed to be deaf to our pleads for assistance and help with her ongoing kidney needs. What other options did we have?!

Apparently, we now have some. Riley has a newish Neurologist, who get this! has a daughter with TS – SHUT THE DOOR! Ok, I’ll meet her. I’ll come back for that service if someone can see TS and not epilepsy. The other issue right now is nephrology. We will see.

Then we move on to the matter of Bai’s back. Her Neurosurgeon has done surgery on Bai’s back, to remove fatty lipomas and do de-tethering surgeries. It has been many many many years, but she has. We are telling her about Bai’s spine already curving, the nightmare we have went through with these super awful amazing rods. This is were the story turns. This is were our unicorn appointment seems divine in nature – completely. There is a new Neurosurgeon at Riley. He specializes in —wait for it—-THE SPINE!! and SCOLIOSIS!! WHAT!? Ok, so we meet him on February 15th at 1:30 and see if this hot shot has any ideas for our Rock Star! It was a very interesting day.

Bai’s neurosurgeon is on our team. She recommended a handful of other specialist to help with muscle issues and pain, that we will be trying to get in with soon. We will try to see this neurologist – maybe switch that back to Indy. It was such a productive appointment, that took 2 hours, Bob and I came out with a we-got-stuff-done kinda high. It was what we needed, but now the debate begins. If this other surgeon seems like a good idea, do we chance it, or do we stay safe with the guy who has known Bai for years. It is a emotional and intellectual debate. What is best for Bai?! Once we meet this guy, I’m sure we will have a better feel. For today, I try not to think about it. Bai turns 17 in May! We intend to take her and the girls to Disney this fall for much needed fun – Bai loves that place. They get to do this surgery, but Bai comes out the other end better. I said so!

That’s our week folks. Life with Bai – never dull.

I’ll be back when I know the plan or can relay more info!

Love

For Her (the Rock Star)
Bobbi

CUTIE ALERT! – Cute pics of the girls below at the Museum!

Surgery

Surgery will be first thing in the morning tomorrow to repair the spinal fluid leak coming from Bailynn’s back. I will let everyone know how it goes after the procedure. We should be able to come home afterwards, but we are prepared to stay the night if not. She threw in her little bit of drama didn’t she!? She is still doing really well. She doesn’t seem to be in distress. She has lost around 17g of fluid since 7pm last night (last measurement was around 3pm today). Pray the procedure goes smoothly and we can go home! Pray this is the last of the crazy. I’ll update tomorrow.

For Her.
Bobbi

Arwyn’s  (aka orangepoppy11) Drawing of her and her sister’s.

Girls By Arwyn

Bailynn, Isobel, Arwyn, Lila & Naomi

1 week and 2 days post surgery

I dream of sleeping. I dream of laying on the ground hoping for sleep. I dream about how incredibly tired I am and I have not had massive surgery, so what does Bailynn dream about? Does she dream of operating rooms, fear, massive florescent lights and surgical masks? I have to wonder. I have to think she thinks about it. Especially the nights she screams out and when you go to her room she is dead asleep. Her mind is somewhere.

Sunday was another great day. The weather was good enough. The kids enjoyed their last day of their spring break playing and splashing in the hot tub. We were all ready to get back into school mode Monday. We have had some issues waking up with the time change and just being exhausted from last week, but over all, rolling into Monday was ok.

Monday I did my best to clean Bailynn up. She was looking so incredibly homeless. So gross – beyond gross. While cleaning her I noticed that the top of her back is swollen a bit now. The area where the goo blob was is irritated again and puffy. The surgeon says there is no reason for concern right now. We are to look for fever, discomfort and excessive drainage. So far the drainage is minimal. Her pain is under control. She went all day yesterday with no pain medication.

Last evening, she got a dose, cause she was struggling to get comfortable enough to sleep. She wanted me to sit in her room with her as she watched her Baby Einstein Videos (which she has loved for years – her favorite is Baby Shakespeare). If I tried to leave, she whined, so we sat. She sipped her drinks and I perused social media and pinterest. Around 2am I finally got to sleep. She did too.

She is struggling to sit. I typically sit her up to change her tops, but she has not been able to control her body for stability. Her back has an obvious curvature to it, but not anything like before. Bai’s back is just weak. It always has been. We are hoping that with the clam shell brace and some muscle work we can help this, but my heart breaks with her struggling to do things she could do a little over a week ago. She also has massive incision, that has to be uncomfortable when trying to sit, so I am hoping that is hindering her want to sit much more than her ability. Time will tell. We haven’t done the car, the wheelchair or even a chair since getting home. When I sit her up during the day, she sits next to me or on my lap so I can help her with stabiltiy (which is hysterical with her being huge).

Her demeanor, only a week and 2 days out of surgery, is amazing. Her appetite is ravenous. Her want to play and squeal have all returned. She is back to being happy Bai plus some, now to get her cleaned up better and out. Our first trip to Target is going to be a good one – I can feel it – that girl is going to squeal herself silly. Recovery takes time and I’m not the most accomplished in the patience department. Somethings I have the patience of steal, this not-so-much. I try. We are just hoping and praying for more good days and moving forward from this.

For Her
Bobbi

I decided to relaunch my Etsy shop right now rather than trying to build a new platform while Bai is recovering. I have been adding things daily. I am so thankful for the warm response and all the orders I have received! Thanks Everyone! If you want to check it out, CLICK HERE! I don’t have a lot of things there yet, but I am working on it. If there are things you have seen me make in the past you’d like to see in the shop, please let me know. I forget things, I don’t think some things are good enough, and I am my hardest critique.

Here are some of the items I have so far! Follow 5PinkPeonies on Facebook for coupons and new items!

 

5 Days Post Surgery

We have made it to Friday and Bai is still doing fabulous! She ate full meals today, we have weened her off her pain meds gradually today to see how low a dose and how long she can make it – long and low. The incision is still covered with a long bandage that we need to remove, but we are opting to attempt that tomorrow and after a dose of pain medications, cause it’s going to be evil!

Today Bailynn got Dory in the mail from some awesome friends! She has snuggled it and stared it down – she’s hysterical. I think she’s waiting for Dory to talk to her. She also got a bundle of pink and purple balloons which have mesmerized her. She loves balloons. We placed them on her bed so she can look at them with her butterflies above her bed. She’s had a great day.
Bai with Dory & Balloons
She is starting to look a little homeless and in desperate need of a shower, but we have a few more days to get through before we can hose off the gross! Washcloth baths are not great. They definitely don’t do the job.

Today we all hung out, watched a mostly-terrible movie called “Strange Magic”. Really, it is quite bad. We made fun necklaces out of some of my graphics and Disney Maps we had saved from our last trip to Disney. The girls had fun picking their favorite ride or location in Disney to wear. This evening Bob and I braved a workout with all the girls (this never ceases to amuse us – we don’t have future ballerinas in our mist haha). Our week is coming to a close and it could not have went any more smoothly.

Pray tomorrow we can get this bandage off with out making Bailynn lose her mind, the bandage remains nice and dry with no new visible drainage so we aren’t terribly concerned if we can’t get it all off tomorrow. If she gets too upset, we will cease and desist. We need to get her sitting up a little more as well. She is going to be more discontent this time with less medication to buffer the large incision down her back. We still have a long road to getting her up and going again – and clean!, but we are doing great so far!

For Her
Bobbi

Here are our awesome Necklaces! I had to Share!

All NecklacesDisney Map Necklacesnecklaces 1

Surgery Day at its End

This day has played out so many different ways in my head. My dreams have been filled with fear, horror, and despair, but the reality, unbelievable resilience from a 15 year old girl. Her frail little frame, seemingly weak, filled with the strength of a mighty hero. Bailynn doesn’t cease to impress or inspire me. How can I fail when she tries so hard? How can I ever complain when she suffers so often? How can I not do when she does all she can? I may be her advocate, but she is definitely my rock. My grounding inspiration of fortitude. I will not fail her. We will not fail her.

She came out of surgery in record time. So fast I was worried. What had gone wrong? Brain going to the worst places! The surgery went off without a hitch! No bone wrapped around the rods, she only lost 100cc’s of blood. The infection was localized to the top portion of the rods inside the hooks that clamped over her vertebrae. The dural tear, that has inconvenienced her in the way of having to stay flat on her back, was only really due to the mass amounts of scar tissue in the middle section of her back. Prior to having all these rod placement, repair, removal, placement, and removal surgeries, Bai had a fatty lipoma removed from her spine twice. Her poor little back has been cut on so much, so the compromised area was doomed a smidgen. The tears were repaired with a dural glue. In 24 hours, if there is no swelling, from spinal fluid leakage, she can get up and move more. If there is, she will have to lay flat on her back for another 24 hours. This was our life over the last few months anyway, Bai in her bed, flat on her back, so she won’t be that upset by the inconvenience. This just may mean we stay locked in hospital prison 1 extra day. That’s it. The 1 and only complication and it is not much of anything.

Her surgeon says her spine looks pretty ridged. He doesn’t think she will have side to side scoliosis issues again, but the weakness in her middle spin is a cause for concern. He has recommended a new soft clamshell for her to have made and fitted at home. FYI, Bai HATES these things!!! But, she needs to heal and make that part strong, so we will torment her with one.

An open letter to:
Scoliosis, 

STAY THE FLIP AWAY FROM MY KID! I am over you! You have terrorized her back! You have put her through countless horrible surgeries! You have made me love swim shirts and hate the way people look at my beautiful daughter’s back! You have made our life a living nightmare! You have taken a little girl, who suffers enough, and plagued her! You evil devil thing! So stay away! Go away! Don’t mess with Bailynn anymore! WE HAVE A MILLION PRAYER WARRIORS ON OUR SIDE! You have no power here anymore!
FOR HER,
Her MOM!

She is lying in the bed next me as I type. The room is dark, her sister’s and daddy back at the hotel.  She is grinding her teeth – to make me crazy (thank you! for making me crazy Bai) – and rattling her toys. She hasn’t cried or whimpered. Not ONCE! She has a massive incision down her back and she acts like it is just another day in this world. How sad. How beautiful. How Bailynn.

I haven’t got to see the incision, but I will in just a few hours when the nurse has to check it. The main issue, as of right now, is that she needs to pee. She hasn’t went since surgery, at all, and she has been pumped full of fluids and drank 3 cups full. I don’t want to have to cath her tonight. It will just irritate her UTI. Please say a prayer the Bai pees. haha. Weirdest prayer request to date!

For us. We can all sleep now (maybe). The worry and fear swept away. My heart fracturing after this week and watching her in such misery, watching seizures, watching her back, all over, done. It only took a few short hours to changed her future. Today, we have given it our all and made it to the other side.

Tomorrow morning I take Lila to Riley (since we are already here) to have a tooth removed. Lila has a fuzed tooth, with an extra large root system, that must be removed for her big girl tooth to come through. An easy procedure after today.

Such peace tonight. It is over, recovery thankfully has begun.

For Her.
BobbiBai 3:7:16

Never as planned

Life never seems to go as “planned”.

Yesterday was a good day. I felt accomplished. I got a new project underway, met with a client, who is fabulously nice, and wrapped up a lot of things at home. Bob got home late, but we still had time to watch Brooklyn 99 and giggle as Charles’ glasses (that are just like the ones Bob’s granny use to wear). We tucked into bed with a good day behind us and then…Bai….oh, Bai. Bai started seizing. Ok, one or two, no big deal, but she was continually seizing. I keep cool in these situations. Staunch and dutiful. I’m sure Bob wonders where my emotion is, but I simply don’t have time to let that clout my judgment as to what needs to be done.

So, I go to work doing the things that I hope will help her. Task to task to take my mind off the deep despair I feel every time I watch her body wrench  into another, uncontrollable, seizure. Since her little baby body did these I have watched her suffer these malevolent things, or as we call them “yuckies”, powerless. Too many yuckies came to pass last night. Seizure after seizure ravaged her body and then the vomiting started.  Her little body rung dry. Around 3 this morning, as a last ditch attempt to get her to snap out of this pattern, I put her in the shower. She sat like a rag doll, slumped, and lethargic. She didn’t even try to steal the water hose or spray me. Trust me, she loves to do this just to see and giggle at my reaction. Her arms laid lifeless at her sides.

She has not had this many consecutive seizures, since she had her brain surgery in 2001!

Now what. We pulled out an emergency medication, from the bottom of the diaper bag, called diastat. This is medication that you are to use in worst case scenario with seizures that last more than 5 minutes. We were defiantly in that stage. The stupid medication was expired. Of course, cause we have NEVER had to use it. I have spent today trying to attain a non-expired dose (should be here tomorrow).

We went to the internet and read what to do if we administer this medication. It is basically rectal Valium. We opted to not give it to her at that time. The side-effects seemingly to great. We placed her in our bed. Our giant, almost 16 year old, who was seizing and throwing up and we pretend to sleep next to her. Pretend. Key word. Her breath shallow, her eyes distant. Me in my staunch distant world to protect my heart and my brain and Bob in a fit of fury cause he can’t fix it, God love him, it is the most helpless feeling in the world. We are the only two people who really get this desperate feeling as a unit. WE suffer as she does. We wrench and break as she does.

Finally morning arrived. Morning allowed doctors to be contacted and many many options thrown at us. The ER was one. Nope, we knew if that was the option, it would have to be the one in Indy. During all the phone call fielding, we continue to watch her seize but now with her sister’s as an audience. A room full of broken hearts. After lunch we got the call that the local pediatrician would see us. A strep test done, influenza test, blood work taken, ears checked, and urine cathed out for a culture. We even did an x-ray of her chest to make sure she hadn’t aspirated during all her vomiting episodes and seizures over night. Her blood work came back with a high white blood count and way too low potassium level. Her urine was so thick, they opted to give her an antibiotic shot in BOTH HER LEGS! At least this made her mad. At least this got our out-of-it little girl to give some sign of fight. Nearly 3 hours after arriving at the Doctor’s office we emerged, starving, tired, no exhausted and all the “plans” for the day shot. We needed gas, Bai needed potassium and we all needed FOOD!!!

Here I sit at home, the strongest little girl I know laying in her bed. She has barely eaten today. She looks like she is swimming in and out of consciousness. Her eyes set in a far off place. Her typical joys, forgotten. She feels crummy and we have done all we can today to fix it. Antibiotics – check. Potassium – check. Every test we could think of – check. Monday. COME ON MONDAY! We need these festering things out of her back ASAP. No more fevers, no more seizures, no more vomit. Come what may with the consequences of these rods being gone. I want my happy little girl back.

So, we will head to bed (soon) tonight and possibly not have to pretend to sleep. Two consecutive hours of sleep at this point, would feel like a lifetime. We repeat blood work tomorrow to see if her potassium levels increase, but she has to EAT for that to happen (and keep it down). 3 more days to fight. 3 more days to get through.

Here’s to the “plans” we all make, may we laugh together as they fall apart.

For Her.
Bobbi