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!

Can you steam clean a bladder? NO?

Today I had one of those calls.  Bai often needs these type of calls, I think she finds pleasure in taking out a shiny wrench from her satchel and tossing it light heartedly into our family spokes. Things had been going too well Bailynn. Much too well.

We have had a great few weeks of summer. We have had fun by the pool, we took the girls to the movie theater to see Finding Dori. This was our first trip to the theater in well over a year. Bai’s past few months have simply been to hard too venture to such a quiet location and hope for the best. She did amazingly well. One of her favorite movies, by far, is Finding Nemo. She can watch it every day and still have the same enthusiasm over watching it. I think the colors and the music captivate her. Finding Dori was no different. She sat in awe. She squealed and blew happy raspberries. She shook her head with joy and intently watched her favorite characters scroll across the screen. Bliss. Bai Bliss.

We took the girls to Opry Mills yesterday with our friends and had a fabulous time. Bai was beyond content. She was quiet and observant. She was happy and participating. These are things we haven’t had for a year. This is behavior we thought was lost. There she was, again, happy. So the call today was shocking. Surprising. We all know (yes, I’m including you – hey you joined this journey, you’ve been here and read this stuff!) she has had chronic UTI’s for the last year. We all know this. No surprise – no shock value there. However, when the nurse tells you that an infectious disease specialist had to be contacted, the report reads like the plot to an outbreak movie, and the term “isolation” was used, shock comes screaming back into the picture. Seriously Bailynn! I wish she could read this! So Bailynn’s bladder has a form of Ecoli in it that is medication resistant and communicable. So medication doesn’t kill it and we all can get it – YAY! I was told to wear gloves when changing her. I have to laugh at this. Bai’s diaper is like a bomb waiting in silence to EXPLODE everywhere. I feel like urine is an invasion upon my life. I wash Bai’s bed sheet layers, blankets and shorts every day. I can’t remember a day when urine did somehow impact my routine. Gloves. Ha. My little Bio Hazard.

We are going to Cincinnati Wednesday to see a urologist, have an ultrasound done of Bai’s bladder, another culture and analysis. My mother was going to make this journey with the girls and I, I thought Bob could sit this one out. I mean really, how exciting can a bladder ultrasound be?! WRENCH. Bob got the call from me about Bailynn. My initial text to him read, “Basically, she (Bai) never doesn’t have a UTI.” This pretty much sums it up. Bai has basically had a UTI since last June. June. JUNE! That is 12 months!

I haven’t a clue what they are going to do. Bai’s local pediatrician is out of ideas. The nurse didn’t think my bladder steam cleaning idea would work, or  a slosh of peroxide in her bladder. Why are my cockamamy ideas so overlooked?! They think I’m nuts and I’m good with that. 😉  I know the problem, Bob knows the problem, Bai’s local doctor knows the problem, but there is no solution. UTI’s are caused by stool, Bai wears a “bacteria breeding ground” aka DIAPER. They are the worst, but what do we do. Tell me other options. Show me a solution!? I am willing to do just about anything. Well, except booty to the wind, that’s just silly and ultimately a new messy problem.

So here I sit after a few months of Bliss. Happy Bailynn. Content Bailynn. Our family is sailing through the summer with parties, fun with friends, and adventures. Bob and I are enjoying a Bailynn that doesn’t scream, a Bailynn that we can touch and lift and play with. We no longer have a fragile doll, though apparently we should be wearing gloves while we handle her right now (teehee). Our daughter is basically a bio hazard – should we get bags!? Barrels!? Signs?! No, too far?! I have to keep it light folks. This is just the worst. Why can’t Bailynn catch a break!????? If we don’t giggle and see the senseless need for this drama, we will cry, we will mourn. I choose to not. I choose to go on and laugh. I choose to throw myself into my family, my girls schooling and my little business. I choose to see that this is just another road bump, we will get over it and hopefully with little damage.

I am watching our family dynamic feel and seize relief. Does it have to be so short lived? We live for Happy Bailynn.

Pray we find answers and a fix (that isn’t the booty to the wind thing – really not pretty!). Pray the wrench is a simple bend in the spoke and not a wheel replacement ordeal. We (again, I’m including you!) all know Bai though. Never simple – never easy. No breaks.

For Her.
Bobbi

Screen Shot 2016-06-27 at 9.52.29 AM

The Battle of the Bladder

It has been nearly a month since I have found time to sit down and update on Bailynn and our family. I have been super busy with my little graphic design business, 5 Pink Peonies, and our family is enjoying the warm summer weather in our pool. We celebrated my husband’s 40th bday and, the next day, 17 years of marriage (21 years of us). The last month has been a relief from stress with a side of fresh worries.  I have tried to start a post a few times, but I find myself angry typing – yes, that is a thing.

So, Bai. Bai has a UTI AGIAN! Not only that, but she is on her second round of antibiotics in an attempt to treat the STUPID thing! We got the fabulous news 2 days after her Bday when she had labs drawn and a culture done. Her bum is roughed up from the meds and diaper rash cream runs dry quickly here. I feel like she is in an uphill battle with these things and she can’t take her Tuberous Sclerosis treatment while taking antibiotics! So after months and months of back issues, no meds, and finally healing from surgery, we are back to no meds cause of these chronic UTI’s. (insert childish kicking and screaming here!)
Bai has been referred to a urologist in Cincinnati to discuss this continual issue, but I know there is no fix for the actual problem. She has to wear a diaper and that simply complicates things. We go June 29th (happy bday Aunt Debbie, Bai gets to be poked and prodded on your day!). She will have some testing done and see an urologist for the first time in over 4 years (we won’t get into why today – that is a long and different story that sent us searching for new care and lead us directly to Cincinnati). They requested all of her urine cultures, analysis, and ultrasounds from the last year. Bai’s pediatrician’s nurse had to fax 32 pages to send all that info!!!! 32! Can you say we have a UTI problem!!! This didn’t happen till we solved her constipation problem, I don’t know which I’d prefer, but it seems we can only fix one…

The girls started their first day of school yesterday. It is so nice to get back to school work after a two month break. The definition that it gives to our day is almost relieving. I can’t believe that Isobel is in full blown freshman school work (though she did do some freshman work last school year), Arwyn is rocking out 7th grade and the twins are smooth sailing into third. Where did the time go?! How are they this big!? Bai would be a JUNIOR in High School! WHAT! No really! WHAT!? I just can’t.

We need these UTI’s to lose and leave -for good!  We need back on the meds that help Bai’s body fight her condition. Summer is in full swing and we are ready for it! Now for Bai to feel as ready for it as us! Last summer was a bust, we have some make up to do!


For Her.
Bobbi

TSC made Us

Bai will be 16 in less than 48 hours. How can this be?!
I feel so incredibly thankful for her, her life, the days we have had, and the future we have yet to experience – good or bad.

I never thought I’d get to celebrate, with her, her sweet 16. By God’s graces, the hands and minds of many doctors, and our undying love and patients for her, we get to have this day. We get to have this memory.

One of my favorite pictures of Bai was taken at Riley just days after she was born, by Bob’s parents. It is framed in her room – discreetly tucked into a shelf. A reminder of our beginnings. It holds in the image the first moments of being Bailynn’s parents. The hopes and dreams we held for her. It contains “Tuberous Sclerosis”. A definition that would tag her for life, not to define her, but redefine us.

Today, as I’m drawing images for different things, other people, I see the photo of Bailynn and my heart needs to feel that moment. I miss those tiny finger and toes. So, I sat and drew it. I made the “moment” a little painting, all drawn on my iPad. Minutes clicking by till 16…how many days and trials have come to pass. How many challenges she has faced since she was this sweet little baby. Years of finding her. Years of discovering small, but meaningful, milestones. Years of fighting. Tears, screams, and exhaustion.

She may not be the little girl I thought I was going to raise. Tuberous Sclerosis was defiantly not something I ever knew would come to consume some of my darkest days and every breath. She is better….I am better….Bob is better…our family is BETTER. TSC could have destroyed us, it could have. I’ll never let those words ruin. We will celebrate what they gave instead of what they took. They made us, well, us. So, here is a piece of my heart, a moment I hold dear. A memory. I hope for many more.

Bai Baby Drawing.PNG

Bai Baby Drawing.PNG

 

For Her.
Bobbi

I have a filter – this is a good thing

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.

We sat.

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.

Summed up:
kidneys still bad,
liver worse,
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!?

For Her.
Bobbi

So you can giggle too – here are just a few of the questions

Q1

Non-verbal?! Why is this not an option! Ok, yes, she refuses to talk!

Q2

Bai is stubborn – does being picky and having to hold things a specific way count?! How can this be applicable to Bai!?

Q3

Again, NON-VERBAL! Why was this not a weeding question at the beginning of the survey!

Q4

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!

Crazy Cin

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!

Not just birds…freedom

Most everyone who hops on here realizes how much I enjoy drawing. I have many of my pieces featured here, on fb, and for sale in my Etsy Shop, but most of you don’t know how each and every piece I create has a story. Like most I seek inspiration for what to draw next. I love florals and happy colorful things. I really like nature and birds. I enjoy drawing steampunk because of its fun fantasy like qualities. I can get time warped into my iPad sketching and making sure every tiny detail is meaningful and artful. If you really look at the drawing I did of my girls at the “Grown Up Tea Party” you’ll see Sylvia in Bai’s hand and much more. I noted my little details that mean so much to me.
Tea party with details.png
If you came to my home, you would find little birds in just about every room. I just love them. So, when looking for inspiration the other day, I began with the thought of being caged, trapped. Why? We have long days here sometimes. We have really great days too, but there are some days that just fill me with a funk that I can’t shake. I get incredibly emotionally attached to Bailynn’s happiness. I get heart broken by seizures and tears. If she is having a good day, I am too. If she is not, I’m not.  It was a trapped day. There was something in her eyes that felt strangled and kept from the surface. For a bit of respite I sat down to draw some little birds on a  branch with floral and pretty happy colors. There is something very free about them. They are able to soar the skies. How marvelous. If only Bai could break out of her cage, and soar like the privileged little birds. She’s my caged bird, I dislike caged birds. Empty cages make me happy. I really like empty cages. There is a sense of opportunity, to me, in an empty cage. This world, Tuberous Sclerosis, Epilepsy, these are cages. Evil, not cute, cages. I take joy in knowing Bai has good happy days in her cage. She tries so hard to let us know what she wants, needs, and dislikes. Some days you can see her rattling the cage door more and trying to make us see. No matter her cage, she lives life so happily when she feels well. There is such perseverance in her. Talk about making lemonade out of lemons. This girl makes the best of all her situations. So for her, happy free birds.
IMG_2172.jpg
I guess I just really wanted to share what every little creation means to me. I draw from my heart, from my life and from my experiences. Yes, they may sometimes just look like birds on a branch, but to me, they are unrestricted. A wish.  They are Bailynn soaring from her cage. They are escape from disorders and seizures. They are hope. They really just look like birds on a branch though right!? 😉

We have had a lot of good days this week. I even got to share some sweet smiling pictures of Bailynn loving on Hamish (aka Ham) and watching movies with her sisters. We have left the house and had no tears. We have enjoyed the growing warmer temperatures and made future plans! The days are getting better again. It wasn’t till we got to sigh a deep breath of relief that we realized just how long this year has been with her back issues. It has been a long year. It has smashed us down and made us scrape back up.  May this next one be much improved!

We head to Cincinnati in a little over a week to talk meds and kidneys. We are still waiting on her back brace.

For Her.

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