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="">










Sunday, October 4, 2015

A (very public) Thank You Note...

Yesterday, the hubby came into the house carrying a cute little gift bag.




 "Tessie's got a present!", he called out before bringing it over to her to open. Naturally I was super curious because it wasn't her birthday so I couldn't think of who or why someone would leave a present for Tessie sitting in the front of Charlie's truck.

The hubs could tell that I really wanted to open, I mean HELP TESS open it so he handed it over as I, uh, WE, dug in. First, the note (I am not going to share everything she wrote but the front of the card was too cute not to share:


the "an old" part that Sam added was too cute


It was from one of Tess's teachers from several years ago. A lady who, whether Tess was actually in her grade or not, has ALWAYS made an extra effort to make Tess not only feel included in school, but more importantly, WANTED. She's had a baby within the last year or so and thus has taken a couple of years off, but she is an incredible teacher. The type any parent is so grateful to have for their child.

But I digress.

After showing, then reading, the note to Tessie, we pulled the present out of the bag. Here it is:




a closer look at the saying


I mean, how AWESOME is that shirt?! I seriously couldn't believe it (even went into Nana Belle mode there for a second) because the saying on that shirt is the one I always apply to Tessie. It's the tag line to this blog for crying out loud (which I'm sure is why Sam thought of Toodle Bug when she saw it) but still....thinking of a kid is one thing; taking the time and expense to actually order it for that child is quite another. And bonus...it's Tess's new favorite color...ELSA BLUE!

And with Tess's spinal fusion only three weeks away, I am constantly reminding myself of that saying. It's become a sort of mantra when I go into those moments of fear. So when I saw that shirt yesterday it was like a sign, and it could not have come at a better time.

Having said that,  I want to take a minute to send out a very public "Thank You".


Dear Sam and Jayda,

Thank you so much for the unexpected, but absolutely perfect in every way, gift that you left for Tess yesterday.

Thank you for thinking of her.

Thank you for the beautiful reminder that so many people keep her in their thoughts and prayers.

Thank you for taking the stress, fear and exhaustion from having a sick kid for the past ten days and instead, throw a bright ray of sunshine our way with your kind gesture.

Tess's spinal fusion surgery is only a few weeks away now and I am living with a lot of fear and anxiety because of it. Thank you for taking my most favorite phrase for Toodle Bug and sending it to her just exactly when I needed that reminder.

Thank you for telling me you and your family are sending her positive thoughts for her surgery. It really does help to know that other people care.

To you it may have been a small gesture but to me, it means so much more that I can say.

Thank you.

XOXO Tessie and Fam.

PS The shirt is the perfect size and I am saving it for her to wear into the hospital the morning of her surgery. It's like her very own battle armor. We are going in there ready to be FIERCE!

PPS I very much hope you don't mind such a public Thank You. It was just too sweet and perfect not to share.  :)