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!

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!

Post Op

Wednesday the girls and I drove to Indy for Bailynn’s post op appointment at St. Vincent’s and for Lila to get her new mouth spacer put in at Riley. Bai was not happy with the car ride, either direction (I will share more about that below). She was however elated to get to leave the hospital with no procedures! She blew raspberries and squealed with delight as we left.
While there, we got fresh x-rays of her back and her hip. Her back looks exactly the same as it did with the rods in it! Huge win for us! That doesn’t mean that her muscles won’t cause issues and future curvature, but for now we are straight. Now we get her healed up enough and start working on muscle strength. Summer can’t get her soon enough, the pool is by far the most tolerable workout for her. Her hip is still displaced, but it has not budged one way or the other. Talk of more muscle and tendon release procedures was addressed, but really what is that going to do?! We have tried these things on multiple occasions. We have done botox, in an attempt to loosen her tightness. We have done serial casting in an attempt to get her hold her legs, feet, and hand in different positions. It has all fell flat, and made her incredibly mad in the process!
Still waiting on the brace for her back and her hand, I’m sure we will hear soon.
I addressed my frustration with the bad (in my opinion) stitch job of the dural tear procedure (images embedded below). The surgeon who preformed this just doesn’t stitch as pretty as her surgeon.  I realize she has had numerous surgeries on her back. I realize her back is riddled with scars, but is it necessary to not try and make it look decent?! Scars are the worst. It breaks my heart, but in this instance again, there is nothing that can be done.
We don’t have to go back to her orthopedic surgeon for 6 months (as long as Bailynn agrees to that!).
Next, we have an appointment to go and see the Tuberous Sclerosis specialists in Cincinnati at the end of April. We will get a CT scan of her kidneys (please pray like crazy! I am terrified of this scan). We will see the neurologist and nephrologist there and talk about finally getting to re-start the Rapamune for her TS and tumor growth. Just a few short weeks till this next adventure.
She is having better days. We still have days were she screams and throws up all  day. She still isn’t pleased with too much movement. She is tender. She is strong. We at least don’t have the worry of metal protruding from her back anymore.

Our trip to Indy:
Most of you that live around here know how windy it has been the last few days. Wednesday, on our journey home, I drove through some of the worst weather conditions I have ever drove through in my whole life. The wind was so strong it lifted furniture, huge bookcases, out of a vehicle a few up from us and threw it upon the highway. Cars scattered and dodged, the dumb truck kept driving! It was a real life game of frogger and somehow we all came out unscathed.  The wind kept us at a constant state of correction and alteration. Cars struggled to stay in their lanes and on the road. Some pulled over, most trudged on. The most disturbing scene was a Semi lifted by the wind and thrown off the highway into trees! The driver was ok, we saw him open his cab door to climb out, but still, what a sight! These driving conditions followed us all the way to Princeton. Then we heard a huge storm was heading our way, skies clear, wind dying, I thought there was no way. It did rain, but from our earlier driving conditions, the weather was finally safe to drive through. We made it home. I happily shuffled my children into our sanctuary and thanked God that we had got there safely, cause there were moments of great fear as we zoomed towards our destination. A very eventful adventure indeed. All for great medical care.

For Her,
Bobbi

If you would like to see the progression of Bai’s back since surgery. I am linking a pdf here. Click if you wish, as always, the images are not for everyone. Bai’s back post surgery 2016

 

1 Day Post Surgery

To say Bailynn is doing fabulous is an understatement. She barely whimpered over night. She struggled with some potty issues, but they resolved. She had her back drain removed. She just gave her doctor a dirty look – didn’t flinch or cry. She has been in and out of sleep, has ate some applesauce and a small amount of her food. She has shook her toys, watched movies, and giggled! She GIGGLED! She hasn’t thrown up – not once! She hasn’t been in severe pain. She is cut from neck to butt, she isn’t screaming! She is going home tomorrow, if she can sit up and tolerate it in the morning, which I don’t foresee her having any issue with.

I just can’t believe how lovely this event has been.

Time definitely moves slower in this place. This day has stretched on for at least a week. When dinner time arrived, it was a relief – finally. When the girls headed back to the hotel with Bob, I could see the light shimmering at the end of this hospital trip tunnel. We have had fabulous nurses, staff, and experience with our doctor and communication. We have had a healthy stream of company. We get to go home tomorrow – yay! 🙂  We have never had a hospital/surgery experience like this….EVER! Bai has a flare for the drama, this is way too laid back for her!

Right now she is, you guessed it, grinding her TEETH!! My head, my poor head, hurts hearing her do this over and over. She is happily watching Finding Nemo on her iPad, she squealed when she realized which movie it was, she loves this movie! Maybe she will be well enough to go see Finding Dory in the theater!?!?! She use to love the theater. She loves movies, but lately, she can’t endure the duration. She has been so uncomfortable, that is why my baby is doing so well. She has found relief! It took a giant incision down her back, but the ease in her gaze and her lack of suffering shows. This was exactly what she need done. It took us months to get here. We doubted many steps along the way to this decision, but here we are and wow. Just wow.

If all goes as planned, Bai will be released after lunch time tomorrow, but we will have  a long trip ahead of us to get her home and into her bed. Prayers for her to get through this jaunt. May the drugs that help control the pain defend her as we jostle and roll her all the way back to southern Indiana. Then maybe I can sleep – still waiting for that.

Lila update. Lila got her tooth removed at Riley today. She did great! The root on it was huge! She made the comment that the tooth looked like a dinosaur bone haha! We come back in 4 weeks to have a spacer placed in her mouth to prevent the other teeth from smooshing in on the space her teeth will need when they can come in – we have post op for Bai on this day as well. I’m impressed with my children’s resilience and their ability to see the difference between a small procedure and a big one. Bob and I are raising tough cookies.

For Her.
Bobbi

Bai Watching Finding Nemo – pure bliss. “Just Keep Swimming!”Bai watching NEmo.JPG

Reoccurring Nightmares

So, we leave for Indy in one week to embark on this next surgery adventure. I’d typically have our bags packed, lists made, the cleaning list outlined, and my action plan for the next few days, but I don’t. I am not sleeping. Instead, I have fallen into a pattern of repeated bad dreams, no sleep, and lack of will to do my common “we are leaving” tasks.

My pleasant distraction has been making invitations, save the dates, and even bridal shower invites for 4 different brides. I even had fun designing some sweet petite Thank You cards the other day and looking into building an ecommerce website (basically researching which one is best right now) and setting up a “shop” page here until I can come to a decision as to what to use.

Sleep however is the biggest issue as of right now. I haven’t been the best sleeper for the last 16 years, but I have never been so disturbed by a reoccurring nightmare that I have had over the last few weeks. As many of you know,  we LOVE Qdoba. It is our favorite restaurant. The girls are super excited that there is one close to the hospital next week and the potential of Qdoba over-dose is likely! However, my dream takes me there.

Every night, when I close my eyes, my world spins into a scene of our family sitting at the back booth at our local Qdoba. We are all sitting, gloom filled, stabbing at our untouched gumbo. It feels cold and drained of color. The scene pans and our spoons jut up and down, no words.  The crowd streams around us, busy as always, like cloudy fog and our world just sits still. We are out of time and space. Our family looks odd, off, like fiction set in reality. There amongst us is Bai’s wheelchair, all I can see is the back and it is tucked at the end of the booth, per our norm.  The scene pans again, more jutting, more foggy people zip by, but now I can see her wheelchair and it is empty. Cold. Blank. Our eyes glance towards it. The whole space feels emptier. We fade to ash and dissolve. Like sorrow swallowed us.  Every night. This is where I go. Her empty chair, our empty hearts, our untouched food, and life spinning about us in a fog. It is a horrifying cycle.

I think my first night to actually sleep will be a week from tomorrow when this is all over. Maybe then, my mind can rest, even amongst beeping machines and nurse interruptions. I just want this thing to be over. Not only that, but I want Monday, March the 7th, to just be another day. I don’t want to make lists, plans or have an outline. I just want the day to come and go. We are making a run to Indy, having rods that are infected and terrorizing Bailynn’s life removed, and then we are coming home. Right?. Simple.

Then we will have to deal with recovery, being stuck at home till she is well enough to be moved about. We will have post-op visits. We will have a chance to see where and what, but not until March 8th. I want it to be March 8th. I don’t want to sit in a waiting room getting updates on her. I don’t want to be surrounded by sad people waiting for their loved ones in surgery as well. I want her next to me and it all done. Come what may after that. We will deal. We will deal if she can’t sit in things. We will deal if the evil scoliosis comes back into our lives. We will deal with muscles that have not been used in years. We will deal with her pelvic bone being able to finally swivel forward and back again. We will deal with post op vomiting, antibiotics, pain management, and life. I just want to leap to the dealing with part. Time machine anyone? Nope. Sheesh.

7 days.

On a super happy side note, a second Sylvia has been located, thanks to Bob’s cousin, Kathryn, in Indianapolis. She does exist! We didn’t have a magical unicorn! Other people do/did have her! We are still on the look out for more, because I doubt Bai’s love-affair for her is going to end, over night, after nearly 16 years. Aunt Carla, you should have given me 10 at my baby shower 16 years ago! haha, hindsight!

In the hospital I will up-date as much as possible. Small updates will be on fb, and I’ll post that evening once Bai is out of surgery and all is well (see my positive thinking! now if my dreams would get on board!).

Don’t forget to wear your Bai shirt on March 7th. If you don’t have one, and you want one, the designs are for sale in my Zazzle Store. You can change the shirt options such as style and color and the price will change based on selection. I just picked a shirt when I designed them. (They always have coupons. Just go to retailmenot.com and put in zazzle)

Bailynn sugery support pic JPEGFOR HER
Bobbi

My Worries

Here is what has happened in the last few weeks since learning that Bai has to have her rods removed.

So, I last left you knowing that Bailynn’s rods are indeed infected and will have to be removed, but the surgeon wants to wait till at least March. This is to get through cold and flu season. I have been on the phone with lots of people trying to get this all worked out.

My first task was to get blood donations from my dad and bob’s dad (Bob and I don’t have her blood type). This step has proved to take days to accomplish. First, I was told that Bai’s blood type wasn’t on file. Ok, we can all giggle at this. How many surgeries has Bailynn had?!?!!!! She just had surgery last fall on her foot and somehow there is no blood type on file? Ok, here is the deal. There was a blood type on file, but all their files are being transferred to digital and the digital file didn’t have it, so they had to request the paper file. This or us go have her typed again, seriously!? Request the file! They did and now the paper work is being processed to get blood, but the complication now is that they don’t have an affiliated blood donation facility here and they don’t like using the red cross. Everything will fall into place, but my nerves are pretty well shot over all this.

My second task (did you see how long task one has been!) is to set a surgery date for March and pray we make it. We will be doing this sometime next week. The surgery request is being put in now. The surgery will most likely take place on a Monday, and more than likely in late March, depending on the surgeons schedule.

Here are our main concerns. Bai’s back still looks pretty awful. Though she has been on antibiotics now for over 2 weeks, her back is still angry and puffy, though not like before. She is also just not very happy. Her tummy gets messed up on these meds and her spirits get down when she has to lay more than normal. We have attempted a few outings and she has done ok, but even the cold gets her in a tizzy. Her little body, I’m sure, aches with these temps.

Now that the reality of all this is settling in, we think of more and more things that worry us. Bailynn could not sit in the wheelchair she is currently in, prior to this surgery. She required a lot of lateral support and specialty seating to sit, does that return, does that happen again!? She couldn’t sit in her shower chair prior to the rods, she couldn’t sit in her tomato chair prior to these rods, she couldn’t sit in the car prior to these rods – people, her spine was so curved she grew over 3″ in the surgery when the rods were placed! I try to tell myself that though she couldn’t do all those things, she could sit on the floor. That is one thing that has been hard to think about over the last 8 years. We have video and photos of her playing on the floor with her toys, crooked back, but playing! After the rods were placed and her pelvic bone tilted, no more. Could she possibly regain this skill with muscle strengthening?

Could her spine have indeed fussed and there be no further issues? I took to doing the one thing I tell others to NEVER do! I went and read accounts online of other people having their rods removed after 2 years all the way to 10 years after placement. Big mistake, but I will also say, best decision. While there were horror stories of hours and hours in surgery chipping away at bone that had looped around the rods, there was a resounding similarity between all the accounts I read, they all felt so much better after the rods were out. They went on and on about how painful they were, in, and how they felt like a robot. Some even expressed how much they would rather be twisted than to be straight again. Individuals that had had their rods in the longest had the least amount of returning scoliosis, though it was only shortly after surgery that they had posted their results. Those who had had rods in for 2 or less years, fell right back into their curvature. Bai’s scoliosis is a result of her left-side of brain being removed in 2001, and having a stroke in-vitro that resulted in her muscles being much weaker on the right side of her body. Now she hasn’t had to use those muscles to really compensate for side to side movement in years I wonder just what happens next. The rods have done all the work. My brain is screaming, my heart is screaming, my head hurts! Stop reading things! Stop thinking! Stop! I can’t. My brain is a run away train. Surgery will be happening before I blink and we will find out just were she stands afterwards, what will have to happen. How seating will be affected, how life may be altered. I need to stop trying to plan for the un-plannable, but I am such a planner. I want to have my i’s dotted and my t’s crossed, but I have this big empty uncertainty as to the next few months of life. Be patient with me and my rantings. My heart is aching. My thoughts stray. I feel like an emotional wreck, wearing a smile, trying to get to the next day.

Once the date is set, at least I can start planning for that to help my need a little.

For Her.
Bobbi