I am not real sure where or when or how the sudden obsession with cinderella started.
Probably the way most obsessions with princesses that little girls have start. Slowly, and then gaining speed til they are near full=on panic mode when said obsessed item is not readily available. Don’t get me wrong – Minnie Mouse, and the entire “Hot-Gog” (Mickey Mouse Clubhouse) gang, are still crowd faves around Kendall’s world. But all of a sudden, she wants to watch Cinderella, pick Cinderella stickers out of the box, read the Cinderella story out of the Disney Story Treasury. (and just to drive me even MORE insane, the digital copy of Cinderella will not be available until October. That’s fun trying to explain to a frantic 3 year old who just wants Cinderella on the crack-pad NOWWWWWW. I know. She’s spoiled. I’m working on it.)
One night after her surgery, when we were trying to pinpoint the pain, and somehow figure out how to differentiate “it hurts everywhere” (sounds a lot like “eeeehhhhhhhhh-ahhhhhhhhhhhhhhhh” very loud and piercingly shrill) from “this is what bothers me”, I started talking to her about the princesses, and about how she had the princesses with her. So we started naming tubies and attachments. Somehow, the vesicostomy tube became Cinderella (and the foley cath was Snow White) (also her broviac is now bibbidi-bobbido-boo). So whenever she would have one of her pain episodes, we would try to figure out if it was Cinderella or Snow White that was causing more pain. It’s kind of still stuck around, even though they pulled “cinderella” out the other day at her post-op followup. We still have to put a new cinderella in throughout the day/nite, so I guess it’s good that she still refers to it as something.
Anyways – my point in all of this was just to update how she is doing after the surgery – with Cinderella. And I am happy to report that finally, finally, finally – things are improving. She still has a LOT of pain, mostly at night, if she’s overdone it during the day. Trying to figure out how to best help her bladder drain and empty all night long without the foley (more permanent indwelling type of catheter she used to have in her urethra) has been challenging. Last night was very tough. Today was better. She was able to go to school last week, and that is a huge blessing to see her recovered enough for that! For those wondering, she goes on Tues/Thurs for 2.5 hours. She takes the bus to school, so it’s another hour total that she is gone. When she has her next IEP, this time may be increased depending on her endurance, but even this amount usually zaps the life out of her, so we’ll see! With a November birthday, she gets another whole year of preschool, so we don’t need to push her by any means!
Her surgeon/urologist was very happy with how her tunnel (the surgery site) looks and is healing, and cathing it is very very easy. If you have never had to catheterize your child, let me try to explain the process to you. The first way is to do it through the urethra. This is as fun and painful as you are imagining. I wrote in an earlier post about how it is pretty much impossible to do to Kendall unless she is under general anesthesia. So now we “cath” her through this tunnel in her abdomen. Literally you just lube up a small catheter (it looks like a clear coffee stirrer), and slide it in sideways. Urine starts spurting out the other end so you better have a diaper/cup/plastic container of some sort handy – and away we go. The hope is that at some point she will tolerate not being constantly cathed – but for the next few months she has that catheter in pretty much all day long. This is partly to continue letting the stoma form/heal (kind of like how you have to wear earrings all the time for a few months after you get them pierced), and partly because her bladder is still so traumatized from the surgery/infections that she literally cannot handle the pressure of “retaining” urine at all. She has still not done a whole lot of urinating through her urethra and it is mostly coming out of the “Cinderella” tube (we double diaper her, so it’s pretty easy to tell). We have had a few trial times without a tubie in Cinderella, and they do not end well or last more than a few minutes, so we’ll work up to more time in the next few weeks.
Overall, things are moving in the right direction! I am so relieved to feel like we can FINALLY stop worrying over her every minute of every day. It’s been a very long month. Today is exactly one month post-op.
As to Karissa’s MRI for those who have asked – the MRI itself went very smoothly. Due to the fact that she had to remain face-down for an hour, and the cyst/tumor we are looking at is very small, so any slight movement could make the images look bigger/smaller than in actuality – she did undergo general anesthesia. I was very impressed with the anesthesiologist down at Children’s Chicago, and he complimented me on being able to be so clear and concise with the information that was actually helpful to him. I wasn’t super impressed with the PACU care, in that Karissa was literally setting off every alarm she was hooked up to and the nurse was just anxious to go get her lunch so she just unhooked her from the monitors instead of manually checking or further monitoring. (It was just things like a crazy blood pressure, high respiratory rate, spiking then dipping heartrate – all things that I knew were cause of the GA, but still, I would have rather had another few minutes of reassurance that she was indeed stabilizing.) At any rate, I somehow got this floppy sack of potatoes carried the two blocks through the city to the parking garage, propped her up in the lobby, validated the parking ticket, and turned around JUST in time to aim Karissa’s spewing of stomach contents into the trashcan and NOT on the nice man’s fresh cast that was behind us in line. Pretty sure at least 40 other people in the lobby decided to forego their lunches due to the show….
Anyhoo – we will find out the results of that MRI in a followup appointment with Karissa’s neurosurgeon in early September. Or maybe its the 21st. I’m not sure. Either way – its not THIS WEEK and therefore it’s not currently occupying precious real estate in my brain. Also, it is weird to say that your 8 year old has a neurosurgeon. She also has a neuropsychologist. Who we WILL be meeting with this week for the results of the testing Karissa has been doing all summer. Due to the fact that our insurance has been sending us pamphlets of info about “how to deal with your child’s ADHD diagnosis”, I’m thinking we are headed for news that she has something like ADHD, but whatevs. We’ll deal with that info if/when it comes. She LOVES her teacher, cries every nite from the homework, and in general still spends a great deal of time gathering clouds, but she is still my baby boogerton.
I mean, gosh dang. When did these kids grow UP??? I can hardly handle it some days. Ok I can. I love them – i loved the baby stage – but I also LOVE seeing the little people they are all becoming. Ok I have derailed any sense of purpose or direction this blog post had…i think its cause we need to eat. Time to go rustle up some grub for the crazies running this place…
Thanks for checking in on us!
(seriously – it would make my weekend complete if I could get 300 facebook fans for the Terra Talking page. Click on the “f” icon up there at the top of the page – it’s bright pink. Like it. Do it. Thank you. Love you.)