It has taken me days to start typing up a summary of what happened with Bai’s CT scans last Wednesday. I always am searching for the right words. The right way to relay the message without hurt, without sadness, and mostly without pity.
The girls and I hit the road last Wednesday and made our way through the states towards Cincinnati. My children are the most amazing travelers, no really be jealous! My only complaint is that they typically need to pee when we are absolutely the farthest from any civilization possible or 10 minutes from our final destination (and they are going to die – always!). Other than the need to pee, my kids never complain about car rides. They are seasoned travelers for sure. All of them were born into this life of taking “Sissy” to the hospital.
We, thankfully, hit one rest stop outside of Louisville and then we didn’t have to stop again. I want to tell a little bit about what happened at this rest stop. We pulled in right behind a road crew truck. I didn’t think much about being behind them until the rudely parked across BOTH handicap spots and right in-front of the concrete ramp, up onto the side walk. I was appalled. I stuck my head out my window and explained to them my daughter was in a wheelchair and how I really needed the spot with the lines to adequately get her wheelchair out. I held my breath, hoping I had not really upset some big looking dudes. The driver apologized and proceeded to move the truck. Now, if I was super rude or they had left, I’d have taken a picture of the “move” job. It was slightly over and up onto the sidewalks. I really didn’t understand, at all, what they thought they were doing. It wasn’t until I was getting Bai into her chair that I realized they were changing the signs right outside the building. Still, why couldn’t they part in a normal spot like normal cars? It was weird, but they were nice and apologetic. I told them “no harm no foul”. They had just graciously, without any kind of snarky comments, moved their truck (weirdly, but moved). I have to say, “Dear Road Crew, Thank You for your kindness in moving. I have never had people be kind to me in this situation, ever. Most are condescending, uncaring and definitely far from apologetic.”
Onward to the hospital. Our arrival time was to be 11 their time (10 ours) for the CT of her abdomen. This scan gives good pictures of her kidneys and her liver. Our next appointment wasn’t until 2:30. We were there forever! I had brought our lunch (since their cafeteria prices are crazy!). The girls and I sat at a round and tried to blow some time. We watched the buzz of the cafeteria and the hospital. There is so much life in these places on the surface and I know just how much death is hidden behind the walls. It is a sad place. Maybe it is just my brain that thinks those things. I feel the heartache in the air.
After we completed lunch, we had hours to wait. We chose to sit them out in the waiting room for Bai’s next appointments. The room that is filled with other people with TSC. Knowing all the children in the room have what my child has is mind boggling. Seeing that my child is the only one that doesn’t walk is heart wrenching.
I was given a questioner to answer while waiting for our appointment time to roll around. This was great fun – no really. These questions were so beyond dumb and NOT APPLICABLE! That the girls and I got a good hoohaa out of them. I even took some pictures of the questions to send to Bob. He shouldn’t be left out of the silly!
There was one young man and his parents that kept catching my eye. He was older, 26 I would find out, and very curious about Bailynn. He didn’t seem to speak, but he did walk. His dad stopped and talked to me, ever so briefly, and asked a little about Bai. I asked little about John. I think Bai stands out to most people because of the obvious severity of her case. She is “involved.” I hate “involved.” John’s dad asked some simple questions. Mainly wondering her TSC diagnosis stuff. I tell him she has lots of angiomylipomas in her kidneys. She has the stupid (a bad word would fit more nicely here) tubers in her heart, lots in her brain, obviously on her skin (John did too), her liver, her right eye, and who knows where next. Oh, and I told him how Bai had most of the left side of her brain removed almost 15 years ago. He was kind, but taken back. John didn’t have very many angiomylipomas in his kidneys, only a few. John has a few in his brian, but not bad.
Ok people. Bai has made me crazy. I will not deny this. So in this very moment – this is what my brain thought! And I swear, I didn’t say it to this poor man. He probably would have found me to be the most bonkers person he’d ever met!
So, as John’s dad is wrapping up his “my kid has only a few angiomylipomas and tubers,” speech. My brain screeches. “Well, my kid is just better at TSC than your kid. Sorry, Bai doesn’t do things half way, like your son. She is the Queen of Tuberous Sclerosis and John needs to step up his game!” Ok, John really doesn’t need to. Good for John. So happy he doesn’t have these evil critters multiplying like bunnies in him. I’m happy his parents are not constantly wondering just what his kidney function is or how bad the scans will look this time. Yay, for John, but Bai Wins!!! She is simply better at TSC than John. Blue ribbon here please. She is simply better at TSC than most.
See – I’M CRAZY!! I love Bailynn to death! She is the best. So, if her over achievement is in being the best at her disorder, hey, owning it!
We got to meet with the team of nurses and doctors, after all the waiting, and they as always were super kind. It had been a long time since we had made this trip. Bai’s back, taking over our life, had kept us away from Cincinnati for a YEAR! We got all caught up on her and we got the clear to restart her TSC (Rapamune) Medication. Then we got the results from the scans. The angiomylipomas in Bai’s kidneys have grown. They did not grown at the alarming fast rate they had in the past, and the growth wasn’t huge, but they had grown. They also found that her liver contains more of them now – bunnies- because, TSC queen wants to make sure no organ is left untouched! Sheesh Bai. We took a special lab draw to look at her kidney function based on her body mass and we are now waiting to get referred to a Urologist there. It has been a number of years since we have seen one. The last time was the moment we realized we needed to find answers somewhere else. It was the doctor that made me find Cincinnati. I was so done with people giving up on Bai. Cincinnati is concerned about Bai’s chronic UTI’s, so we will see a urologist if they think it will help.
That is the trip last week. Minus the crazy bad weather home. Minus the lightning hitting within feet of rocket and my coffee intake at all time high levels to get us home.
kidneys still bad,
Bai is better at TSC than all other kids,
lightning is the worst when driving,
we are home, alive and on the medication again
we have to go back in 6 months
I’m crazy and realize I should keep most my brain thoughts to myself (so I share them on this public blog haha!)
Bai turns 16 in 9 days…..WHAT!?
So you can giggle too – here are just a few of the questions
Non-verbal?! Why is this not an option! Ok, yes, she refuses to talk!
Bai is stubborn – does being picky and having to hold things a specific way count?! How can this be applicable to Bai!?
Again, NON-VERBAL! Why was this not a weeding question at the beginning of the survey!
I hate this question! Just so everyone knows, I selected of “Normal Intellectual Ability” because she is for Bai and for all I know she is a genius trapped in there! Stop putting everyone in a box!
This is what it looked like trying to get out of the city and to Chuy’s to get food! I am so not a city girl when it comes to these crazy people and their traffic!