Long time, no talk.

I am not even sure i remember how to publish a blog it’s been so long…

It has been a rather “challenging” couple weeks since Kendall’s surgery. Nothing that was horrifically bad, well, if you don’t count the whole watching Kendall disintegrate with pain for two straight weeks thing. But other than that, it’s just been kind of…buckle down and keep moving forward mode around here.  I am not even sure where to begin with “catch up” on all that’s been happening, and since most of it is just a lot of medical mumbo jumbo, i’ll probably just try to sum it all up and move on from here! And then you’ll just get a lot of the random terra drivel that keeps you coming back for more.

Sound good?

Ok so – since our last post, it has been a mind-numbing blur of trying to keep up withIMG_1186 a very ticked off Kendall, trying to stay on top of her pain (that is the cause of the pissed-offness), trying to not question our decision to keep her home vs. going in for an eval at the ER, trying to just survive as best as we know how, adjust to this new “normal”.  And yes, I realize that some of this sounds super melodramatic. I am really not trying to make it seem that way, because I get that its not really “THAT” bad.  But her pain has been at epic levels, and it did not appear to be solely from the surgery. In fact, after the first two days, I am pretty sure none of it was from the surgery. She was very bruised and swollen where they had to push pull and tug at her skin to get the port implanted under the skin, and thread the catheter (iv tube) through her jugular vein. But the pain she was having was definitely of a more intense nature. As best as we can piece together after the fact (we being ben and I, her nurses, and our GI in milwaukee), it seems like the GA just did a number on her whole gut. I’ll spare you all the grisly details, but it was not pretty. We went through two bottles each of childrens tylenol and ibuprofen. No kid should need that much pain reliever. But to go to anything stronger would have only led to even slower gut motility than what she had, and that would have been much worse. It was a definite rock and a hard place. And we kept thinking that any minute she would turn the corner; after this nap, or tomorrow morning, she’ll wake up and be herself again.

Today is exactly three weeks past surgery, and I would say that she JUST started turning that corner on Sunday morning. as in two days ago. It has just been very draining. That is the best way I knowIMG_1199 how to put it. Her needs on an emotional level have been so high – not understanding why she felt so bad, and not knowing how to communicate her pain, or how to allow herself to be comforted. I think it was one of the first times that I have ever realized how “complex” her care actually is – and not from a purely medical standpoint. Complex in that nothing is straightforward. She has so many different “parts” to what affects her, that to try to fix one causes another to crop up. You can’t solve this problem because that solution aggravates this other problem. She is a virtual “whack-a-mole” of issues, and while our issues aren’t super critical at the moment, they are still difficult to deal with because one always leads to another. And its just hard to hold it all together some days.

i want so badly to take her pain away. I want it to be me with all the tubes and wires, so that she can run and play like a regular little girl. But you know what – SHE is the amazing one. She is the one who can be pinned down and jabbed in the middle of her chest with a needle, and be crying only because she can’t eat her oreo while we have the “sterile field” set up. She is the one who has learned to pick up all the tubes behind her and stumble her way from room to room, falling here, and running into that wall, or falling off of that chair – and pop right back up with a smile. And i am so sad that that smile has been mostly M.I.A. for the last two weeks.

But I think it’s gonna make a comeback here real soon.

Cause that’s just how my girl rolls. She gets knocked down, but she gets up again (and without the aid of the whiskey drink and the lager drink as per Chumbawumba’s instructions).

editor’s note: if that sentence makes no sense to you whatsoever, it’s totally fine. It’s just a song reference. Carry on.

It has just been a kind of crappy couple of weeks. We lost another mito angel, a sweet little girl named Ellie. I did not know of her until after her death, but she had an adorable smile from the pictures I have seen, and just seemed to exude life. She was 4 years old, and had a very aggressive form of mito known as Alpers Disease. Another little boy is in the fight of his life (for about the 3rd or 4th time in his short 4 years here on Planet Earth). Our little friend Eithene continues to struggle with the effects of a disease ravaged body trying to fight superbug infections. My heart hurts to even pray for these families, and the so many others who are dealing with the pain of living with an incurable disease.

See – I’m a real Polly Sunshine lately. It’s part of why I’ve avoided blogging. IMG_1175 I still believe in our God who is bigger than all of these problems, and who loves us enough to hold us through them. He is faithful, and He is always in charge. I know this unswervingly. I know that as much as it pains me to see Kendall in pain, it pains Him even more.  I don’t know the answers to any of this. But they are not mine to know.

We will all be ok. Because of the amazing generosity of so many of you. The cards, the gift cards, the chick-fil-a coupons, the face lotion, the offers of help, and the help that didn’t wait to be asked…YOU are all an amazing part of this story. I need to still do a proper “thank you” post. I hope you all know how very very very appreciated you are, even if I haven’t been able to scrape the energy together to send real thank you cards.

It’s been a rough few weeks. Having to deal with some of the worst pain I have ever been in in my whole life last week from {unidentified issues that i am trying to pretend aren’t gallbladder related} did not help me get ANY kind of my groove back. I am so grateful for those of you who put up with my whining, my disappearing, my moodiness, my….just me…..thank you. You know who you are.  I am hopefully clawing my way back out of the murkiness of the past couple weeks, although I know there’s still so much processing to do. I was just talking with a friend about the fact that while Kendall herself is not doing any “worse” than she was before the surgery, my view of her has kind of been “expanded”. I have been able to happily deny many of the other issues she has had to deal with in her life. This one, not so much. I am not sure why. I just know it is what it is. And that’s about all I have to say about that…

We are hunkered down for the impending arrival of “Snowmageddon 11” – a storm predicted to dump up to 24 inches of snow on Chicago=land, IMG_1203 and then blow it all around with 45 mph winds. Sounds like a rockin’ time. A time just perfect for Kendall to pull a Kendall, and do some strange thing that will require hospitalization. (and i’m only mostly kidding…) The girls already have a snowday for tomorrow, and Ben is halfway done with his first bowl of queso dip. I just hope we have enough cokes.  And really, I’m kinda excited for the big snow! We hardly ever get good REAL snowstorms around here, and its pretty awesome! I have the camera set up to get a shot every half hour or so of the amount of snow being dumped – I’ll try to have some of those up tonite to show you all!

And I think that concludes this episode of randomness. I need to go get some of the queso dip before it’s all gone.

And if you have any questions about anything having to do with her surgery or anything – please feel free to email me. I feel like I have had so many individual conversations with people over the past couple weeks, that I don’t know who I’ve told what to, and what  I said I would just blog about so everyone could hear it…

terra@2sisphotos.com

I hope that link works.

Ok seriously. the queso is almost gone. I’m going.

peace!

 

t-crest

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Comments

  1. I have so missed your updates, but I am completely sympathetic. I can’t imagine all the different emotions your family must be dealing with trying to help out baby girl! Stay strong. Let people help. Enjoy the quiet when you can get it. (((hugs)))
    THEcoolestwifeEVER talked about…Preparing for the storm