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!
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!
For Her (the Rock Star)
CUTIE ALERT! – Cute pics of the girls below at the Museum!