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Intensive Care Christmas: In Hindsight


I can sympathize with war vets, who upon returning home just sit and stare out the window day after day, trying and failing, to assimilate the events of the past so that they can partake of the present. Of course, we don't have it THAT bad. I mean I didn't happen to kill anyone though there was a moment or two when I did consider it. (The shunt clamping episode comes to mind) And thank the Lord that Leo is home and recovering, so that's all good. However, who ever knew emotions to be practical thinkers? Nah; emotions just fly chaotically from the part of our brain that is covered with lizard skin. Rationality doesn't even venture near that neighborhood. All's well that ends well sounds like a good idea, but it's awfully hard to put into practice. Perhaps this time we are a bit older, or maybe it has to do with this brutal cold winter we've been having, or the fact that our cars have decided that this was the perfect time to start acting up and breaking down, or feeling like we are strapped and stranded for the umpteenth time, or perhaps it is the stress of the unknown, the uncertainty of our times that makes it so much the harder to just pick up the reins after our exile in the hospital. Whatever the reason for our slightly shell-shocked state - just pick one I suppose - it's time to make peace with our lizard emotions. Please bear with me, and don't judge my lizard even though it's probably all whiny and silly.. it is after all, just a dumb reptile who can't be held to the same standards as say, a horse.... 

Lizard emotion number one: regret. I'm regretting our loss of Nativity. I regret the fact that we have totally missed the "Winter Pascha" of our church season, with all its quiet joy and celebration. I regret that Nika spent Christmas farmed out to friends and family and that her stocking was empty. I don't mean to say that the kids didn't get any gifts, they did, but it was as an after-thought, not the focus. There is more to Christmas then gifts, but as a child, it serves as a reaffirmation of your parent's love. 

Lizard emotion number two: guilt. I feel guilty that I didn't realize what was happening to Leo sooner. His shunt symptoms started out subtle and then coincided with a virus that hit our whole family pretty hard. I did bring him in to the clinic, but they just went along with the whole virus thing, and in their defense, Leo's collapsed lung apparently sounded ok and fooled even the ER docs who couldn't reconcile themselves with his chest x-ray and his apparent lack of symptoms. He was de-stating, oxygenation wise, but only in the upper eighties, and didn't seem to be laboring very hard to breathe. The explanation for this was that even though his lungs were pretty much squashed, the fluid was not directly inside the lungs themselves, but in the pleural space surrounding them. Once they put in the chest tube the next day after his admittance to the unit, the fluid practically exploded out, since it was under pressure from his brain and drained, drained, and continued to drain liters of fluid until the externalization of his shunt at which the flow completely stopped. My guilt whispers evilly in my ear that had I only recognized his symptoms a month ago for shunt failure I could have spared him (and us) this very painful and drawn out ordeal. Any earlier x-ray would have shown the fluid beginning to collect in his pleural space. The other, and somehow more sinister and illusive guilt is the one that directly concerns my character. I should have been tougher. I should have sucked it up better through those empty nights, the grueling marathon days, I could have been better at stopping my shaking hands, and I could have, for God's sake, been able to eat something during those five days of "unknown diagnosis." (Justin is blessed by the other side of the coin in regards to stress eating instead of stress starving, the lucky bum) However when our Neurosurg's PA came dancing in announcing that the fluid that they sent off over Christmas to test for cerebral spinal fluid came back earlier and was positive for CSF, I was suddenly ravenous like Tom Hanks on the deserted island and gobbled up a whole platter of these incredible fish n' chips that my sister in law brought over. It was such a relief you know? To finally know that instead of some crazy crap disease that no one has ever heard of, or Boy just wasting away slowly from some unknown cause, there was finally something that we could do and fix to make him better. Gone was that wretched and confusing helpless feeling, now here was something the docs could sink their teeth into and take some actual "healing" action.
Of course it wasn't all so simple. The pedi-neurosurgeon was out of town on vacation, as were many people it being Christmas and all, so there wasn't a whole lot that could be done until he came back. What they could do, and did, was externalize his shunt from his belly to further prove their diagnosis. This surgery was preformed by an adult neurosurgeon who sometimes stood in for the pedi one. It was a simple procedure and Leo seemed to immediately perk up once the fluid was no longer causing pressure but draining freely out of his body. However, boy had not one, but two leaky holes in his chest that caused him a great deal of discomfort. He couldn't move even if he wanted to. His two fluid outputs were closely monitored and even at some point when the PICU was too quiet and the docs wanted to spice things up, the shunt out-put line was clamped to see what would happen. This was never really ok with me, and I was kinda bamboozled into grudgingly agreeing to this. Either the fluid would start backing up out into the chest tube, which would prove a leak, or it would back up into his brain. I'm sure you can see why I was not a happy camper. I was, unfortunately proved correct again in my misgivings because within an hour, the smiles that Leo had just gotten back that morning disappeared and were replaced with severe illness. Boy was retching and passing out from the pain in his brain. They wanted to run the test for four hours after which they would get an MRI of his brain to check for expanded ventricles. At hearing this I went bat-shit crazy and yelled that if they didn't "unclamp the f*#&ing shunt I was doing it myself." (I feel a little guilty here over my crazy mom routine, but it's not too unbearable to tell you the truth.) Anyway the shunt was hastily unclamped and like magic, within the hour Leo was smiling and playing on the iPad again. Brain pressure really is the pits and I'm never ever getting ambushed into letting them give it to him on purpose, even for some crap diagnostics, ever never again. To look at it from the bright side, I know now know exactly how boy looks when he's under pressure, and would not mistake it for a virus again.

Lizard emotion number three: Frazzled out. I know it doesn't stop right? I'm sure you are all like ugh enough already lady...but hey it does help to get it off my chest. Bear with me...
We are all soo frazzled. Nika has to re-adjust again to having parents who aren't jumping to her every whim and command, mostly because they are spread eagled on the floor in a state of collapse, or standing outside in the freezing rain or snow or whatever miserable atrocity the sky is torturing us with, and methodically kicking whichever car it is that doesn't work now and cursing. At least when we were in the PICU we didn't worry about wether or not we could get out of our icy (or snowy) driveway. We basically lived off of adrenalin the past two weeks and now that it's all over, switching over to regular fuel choices is proving a bit difficult. It's tempting to just keep finding more sources of adrenalin. I guess I can see where our government is coming from, but that doesn't mean I'm not hoping for an alternative source here...

Lizard emotion number four: wising up. As wretched and inconvenient this whole experience was, it was very valuable. We learned some very important things about shunts, our boy's shunt in particular, his brain, his docs, and most importantly how very lucky we are to have such supportive family and friends. Both sets of grandparents came through for us with flying colors; bringing food, helping with Nika, listening, shoveling out vehicles, just being there when needed. You guys are the best. Same goes for our friends who also did most of the above...you guys are the best too! We learned to acknowledge our lizards, but still act on a more rational plane. Yeah the emotions are there, you can't get rid of them, but you can get rid of the negative connotation. I'm not saying to make them positive, because hell there really isn't anyway to do that, but just to make it benign; neutral in the emotional effect. Yeah it's scary to be in the PICU with your baby, but that IS OK. Affirming the lizards keeps em happy and calm. Denying them makes them naughty and bad tempered. I'm ok with feeling run down and drained by the last month, and I know that it will be ok, since even though we maybe cooped up at home, some friends brought soup, and we are all together, just where we belong. And Leo, though looking either like Aang "the last airbender," or  Darth Vader without his helmet, is right now bugging his sister just like any other younger sibling which makes our hearts happy. So yeah, though the fall out may continue for us and Leo too, as he lost some definite ground in this long illness development/therapy wise, I'm confident that in time we will get our "chops" back and hit the road fighting fit again.

Before this all went down, I had a plan to get "real" family photos done, but since my plans panned out, here is our half-hearted nod to the holiday family photo. I think they do the job. And since we never got to say it:

 MERRY CHRISTMAS and HAPPY NEW YEAR everybody!!!





And my photo-shopped version...(fake snowflakes are way cooler then the real ones you know.)




Comments

  1. I'm so glad you are guys are home and everything is figured out. I'm sorry you missed all of the Christmas church and I don't blame you at all for reacting the way you did to the shunt clamp. You son isn't an experiment!

    ReplyDelete
  2. Oh my goodness, I felt a fight-or-flight response when reading about them clamping the shunt! I don't blame you at ALL for reacting the way you did. It's a good thing you did! Whew...

    So glad things are getting back to normal...

    ReplyDelete
  3. a good dose of heart-felt vulgarity can do wonders for your lizard ♥
    love,Claire

    ReplyDelete
  4. Mama's intuition about what's going on with her kids is always strong, but initially difficult to translate into words and direction. Experience turns intuition into strength and direction. Congratulations on getting past this hurdle,Mama Lion! For me, a simple undiagnosed earache sends me into those lizardy places. What an ordeal! Your grace, reflection, and strength in the face of insanity are, as always, astounding. A blessed feast of Theophany to you and all the family! Love, Elaine

    ReplyDelete
  5. Yahoooooo! Amen to all those lizards! They make all of us mommas proud to pieces!!! Thank you Anna!
    And those fake snowflakes are way cooler-just don't get carried away and move to Hollywood...even if the Lion is blockbuster worthy.
    Love, joanna

    ReplyDelete

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