JUST as I was about to sit down and blog about Kaylen’s surgery scheduled for tomorrow morning to have her tonsils and adenoids removed, the pre-op nurse called to tell me that the head anesthesiologist was not comfortable with our family history (Kendall’s history!) of anesthesia reactions, so he would not allow her procedure to be done at their facility. (basically if they use the wrong mix of medications, kendall ends up in the PICU not wanting to breathe on her own and her body goes into metabolic-disco mode trying to stabilize itself. It ain’t pretty. Luckily CHW now has a two inch thick file on what NOT to use, and they have her down to a science.) turns out that kaylen’s procedures (and karissa’s a couple weeks ago) were NOT at CHW, so they don’t have the family history in the record.
there are so many paths of frustration that I could spout about regarding this that I hardly know where to start. The fact that I tried to point out to her doctor last week that I’d like more info regarding how long she would be under so we could make better decisions about her anesthesia – or the fact that I asked the nurse if the surgery center would be equipped to handle the anesthesia issues we have run into in the past (and was told absolutely!), or the fact that ANY TIME I bring up a concern about anesthesia and that I’m not trying to be a psycho about it, but I’d really prefer to never have to watch another kid go through what i’ve watched kendall go through ever again, I am somehow the crazy one. Until a real anesthesiologist reviews the notes. And then all of a sudden its a fricking five alarm fire again.
But at the end of the day, I am grateful that they ARE taking the concerns seriously, and that Kaylen will be very protected during her procedure. I just hope it is soon – SOOONNNNNN do you hear me?!?!?!? The 3-4 nightly wakings from her, the flopping around in pain from her legs and arms and belly and throat and head, the behavior issues that are becoming more and more out of control – it is wearing on us all. I would never have guessed the extent of the problems that “sleep issues” could cause – not only to the one with the sleep issues, but to the entire family. Having had the light at the end of that tunnel in very clear view made me realize just how desperately needed this surgery is – and how very high my hopes are on it “fixing” everything.
and I just now am realizing that I think I have only briefly touched on Kaylen’s issues here on the blog. You might have picked up a few more if you are on Facebook and hear my complaints there. I’ll have to do another “sleep” series on just her issues because I want to document her journey too – in case it helps other families like ours, at their wit’s end trying to deal with a child who is out of their minds and out of control because they NEVER EVER EVER sleep. We have run the gamut of trying to deal with things that normally inhibit sleep in preschoolers – she sleeps in a darkened room, there is a white noise effect from a fan, she doesn’t have toys in her room, etc etc etc. Then we found the magical Sleep O’s and while they ARE still magical and help her GET to sleep, she cannot STAY asleep. I did not connect the horrific daytime behaviors to the increasing LACK of night time sleep for a few months – again because there are a lot of variables in Kaylen’s environment – a sick sibling, a distracted mommy focused on the sick sibling, the nurses in and out of the house, lack of one on one attention – all of which have been and continue to be addressed, with mostly negative results. Like the more one on one time we try to give her, the more she is acting out.
I am too worn out at the moment to fully rehash her behaviors – and blessedly, she manages to keep herself together for the most part in public so most of you will never have to witness one of the crazy meltdowns. But trust me – they are horrible. It drains my energy on a daily basis. It stresses out the other girls. Ben and I feel like we are tag-team-wrestling trying to deal with her when he is home. It’s brutal.
and right now, the best theory is that it’s all because of the sleep apnea caused by her super-sized tonsils and adenoids. It makes sense – it kind of nicely ties up all the issues she deals with – the behaviors, the muscle/joint aches and pains, the tantrums – all of it COULD be due to sleep apnea. What we don’t understand (yet) is why her tonsils/adenoids got so big so fast without recurrent infections. It could be a horse and cart type of process. And we probably really won’t ever know. We do know that the major issue right now is opening her airway back up so she can hopefully breathe better at nite. After that we will be scheduling a sleep study to see if there is still any remaining apnea, and doing more in-depth allergy testing so we can be assured that she is on the right medications for that.
anyways. we will find out tomorrow morning where and when the surgery will be rescheduled for. I know that Dr. K’s nurse felt horrible about the mixup, so she is going to try her best to still get Kaylen in sometime this week or early next at one of the hospitals. Please pray its very soon – for ALL of our sanity! (and for the sake of my K-cup stash. i got four boxes for Christmas. they are almost all gone. I am pretty sure if i had bloodwork done right now the levels would read “French Vanilla – 7.8, Extra bold – 3.4, caffein-ophils – 98%”. with a side of Coke mixed in. And if you are lucky enough to get sleep at nite – i mean the real, good, deep kind you get in when you get to sleep more than 2 straight hours at a time without being JOLTED awake by some urgent need for a tums or ibuprofen or lip grease or to pick out the outfit du jour for the next three days right then and there at 3:24 am – then please please please enjoy a few minutes of that deliciousness for us!
I’ll keep you all updated. Cause i know you’re hanging at the edge of your seats and stuff.
At least we know that things WILL get better! Eventually. They always do! They might change and look different than what you’d hope for or expect. But they always get better.
ok before I start re-pinning my entire pinterest collection here in an effort to make myself feel better, i’ll wrap this up.
Maybe if you’re REALLYYYYY lucky I will be so hopped up on endorphins after dance class tonite that I will post a happy/funny blog!!!
See you all on the flip side.