Wednesday, October 21, 2015

Where we're at...

So it's about twelve days until Tess's spinal fusion surgery.

Gulp.

I keep thinking about that moment when they will wheel her away from me and take her to the OR. How I'm going to be sending my happy, giggly, trusting little girl into a place where they are going to slice her back open and, when she wakes up (God willing she handles the actual surgery okay) she will be in major pain and could have other problems. I don't want her to think her dad and I let someone purposely hurt her, so, knowing that Tess is a very smart little girl, I am going to take the time to gently explain to her what is going to happen and that she will hurt for a little while but that she will feel so much better when she heals up. Better than she has felt in a very long time because her lungs will be fully opened up rather than misshapen and sort of crushed like her left one is now. Plus she will be able to work her body in other ways so much more efficiently because she won't be spending all of her strength just trying to remain upright. I pray she takes that information in and understands that sometimes we have to hurt before we can heal and that it's because we love her so, so much, that we are having her go through all of this.

Oh the guilt of knowing in my heart that she absolutely needs this surgery but also knowing I am going to send her to be hurt in order to have her heal. It's a very squirmy feeling. That's the best way I can describe. Like something is squirming around in my heart and squeezing it.

We took her to Boston Children's Hospital last week for her final pre-op appointments. There were a few more hoops to jump through and they really wanted her to see her epileptologist because her seizures have been increasing in frequency and strength. They want her going into surgery as medically stable as possible and an increase in seizure activity does not meet that criteria. Her doc (whom I just love) sat with us for about an hour and, after hearing about all of the changes including one particularly scary day when Tess was at school and Oreo was alerting like crazy and whimpering and basically not wanting Tess to be taken anywhere to the point where her nurse called me and asked me to come to school only to realize that yes, something wasn't right. Tess was...off. There's no other way to describe it. I thought she had probably been having some new, weird type of seizure based on the nurse's description of what had happened and then Tess did it again and I saw for myself why she (and Oreo) had been worried. It was just bazaar so when I told her doc all about it she worried that maybe Tess had had a "syncope" episode and promptly ordered and EKG to make sure her heart was working ok. Tess always has a tachy heart rate and it can jump around pretty quickly but the doc thought that whatever Tess had done that day in school, it didn't sound like a seizure.

Then she brought up something that, in the five or six years that she has been treating Tess she has never brought up before...

SUDEP    (Sudden Unexpected Death in Epilepsy)

Well, yeehaw cowboy.

Of course I had heard of it but what I really wanted to know was why was she bringing this up now? What had triggered her need to lead us down this road at this time?

As it turns out, there were several reasons.

First, Tess still has an intractable seizure disorder meaning her seizures are not fully controlled through medication. So. much. medication.

Second, Tess is getting older and apparently that increases the risk of SUDEP.

And lastly, Tess has other neurological issues which also increases the risk.

Then she asked us if Tess was monitored throughout the night. I said yes and she was very relieved. She was even more relieved to know that Oreo slept with Tess every night as well. I told her that if for some reason the monitor didn't let us know Tess was in major trouble, I felt very confident that Oreo would and she agreed. Then I made the mistake of assuming that that meant Tess was sort of protected from SUDEP because of these alarm systems we had in place. She very gently told me that when someone passes from SUDEP it happens very quickly and they are just gone and, even if a parent, nurse, etc, is right there, the person is usually already gone and can't be brought back and the doctors are still all trying to figure out why. Then there was this little gem...SUDEP rarely happens during a seizure like you would expect it to. It often happen a little while after a seizure. The brain just sort of throws a switch and says, "I'm done" (my wording based on her explanation, not hers).

Ain't that just a kick in the chops?! Because you know, we don't have just quite enough to worry about. *snort*

But I will say that, after a lot of tears and prayers,  I am at total peace now with her having the surgery. No matter the outcome. And as for the SUDEP, I refuse to spend too much energy worrying about that. To me, it's an, "It is what it is" type of thing plus I keep hearing the doctor tell me, "...and most times, there's not a damn thing anyone could have done to stop it.", which in a weird way, brings it's own sense of peace.

So I guess this is where we're at right now. Big worries, big surgeries, and one little girl in the middle of it all.

And what a little girl. Am I right or am I right? ;) <3 p="">










10 comments:

  1. We are praying for you guys, Joanna. <3

    ReplyDelete
  2. So many good wishes and hopes for Tess and all of you every day, but especially now as you face this new challenging endeavor!

    ReplyDelete
  3. Joanna, I just did the math (12 days) to make sure Tess would be able to have Halloween before her surgery (and selfishly that I get to experience the photos on FB). Hundreds (thousands?) of people will be holding her in their hearts through the surgery.

    ReplyDelete
    Replies
    1. Unfortunately, due to the medical lockdown we have imposed until surgery, not trick or treat this year. :(

      Delete
  4. May God be with Tess, she is one blessed young beautiful lady to have the parents and family that she does. Prayers for her and her family.

    ReplyDelete
  5. Tess really is a ray of sunshine, through and through. The short term result from the surgery will be so very hard but here is hoping that a) she pulls through well and b) the long term result is tremendous. Maybe with less stress on her body from how her spine is situated some of the other issues will also calm. One can hope, right? The fear that she will believe you and her dad somehow "allowed" someone to hurt her is very valid. Hopefully though she knows all too well that you'd never, ever allow someone to do that; that this is for a hopefully greater good that will be clouded for a little while by pain that should pass.

    Oreo you keep being superdog and taking care of your girl and her family! If you guys need anything while you're in Boston please don't hesitate to reach out, we're not all that far away.

    ReplyDelete