Rhymes With Fuchsia

Saturday, April 14, 2007

Saturday Sky: Sleepless in Boston

(or, how to freak out a neurologist without really trying)

Please bear with me: there is a sky picture, really, to celebrate the happy ending of this post.

The second half of this week has been a definite improvement over the first half, in the sense that not much has happened since Wednesday. The story of the first half begins on Monday, when I get a call from Taz's school nurse. His teacher has noticed that he is smiling on only one side of his face and has asked the nurse to check it out, and she has confirmed that the smile is indeed lopsided. I call his neurologist, Dr. P, and leave a message for his nurse, but she doesn't call me back. (The woman I speak with says she knows nothing medical so there's no point in my telling her, but I probably should have.)

Tuesday morning, smile still lopsided, I email Dr. P. Very quickly I get a reply: bring Taz to the ER at Children's to get this checked out. I call again and, with a minimum of persuasion, get Dr. P himself on the phone. I presume you mean now, I say. No need to drag him out of school, says Dr. P, but bring him in today. He tries to find us a clinic slot so we don't have to come into the ER, and, failing, alerts the ER to expect us.

I wrap up what I was working on and drive home. Taz's van is late, naturally, but it finally comes, and I transfer him to our van and begin what proves to be an easy and speedy drive to Children's — until we get off Storrow Drive, that is. It is freaking opening day at Fenway Park, which is conveniently located half a mile from Children's, and the Sox are winning 14-1 in the ninth. Go Sox, of course, but that means a lot of the fans have left the park already, and it takes us a good twenty minutes to go five or six blocks. Finally we make it to Children's; by now it is 5:30, so at least we don't have to go too far up the parking garage to find a spot.

The ER is jammed. I'm relieved to find that they are indeed expecting us, so we get to cool our heels for the next eight hours in an exam room instead of the waiting room. I talk with an assortment of medical professionals, and, luckily, Taz is awake and in a good mood, so they all get to observe the lopsided smile. An ER doc tells me Neurology will want to see him, but they'll want the results of a CT scan first. I point out that unless we get very lucky he will need to be sedated for the CT scan, after which Neurology won't get anywhere trying to evaluate him as he will be asleep. She allows that I have something there and goes off to call Neurology. Meanwhile, the nursing shift has changed, and a very hot nice young man comes in and announces himself to be Justin, our night nurse. He takes Taz's vitals and eventually puts in an IV for the CT-scan sedation. It's been almost eight years since Taz last had chemo, and he's no longer a nigh-unto-impossible stick (chemo weakens the blood vessels); Justin gets the IV in on the first try, for which we are all duly thankful.

Around 10:00 we are visited by a neurologist, Dr. Y. He goes through the story with me (this is roughly the sixth time I've explained why we're there; apparently they have all read Taz's chart but want to hear me tell it anyway), shines a light into Taz's eyes, ears, and mouth, and tells him to smile. Taz of course just looks at him. Finally I get Taz to smile by playing peekaboo with him. Dr. Y looks quite impressed; he says we'll wait for the results of the CT scan.

Around midnight Justin accompanies us to the CT machine. He says let's try it without sedation. I am somewhat skeptical, but too tired to argue. Taz is still awake but apparently too tired to move, as he thwarts my expectations by lying still while the technician lines him up and does the scan. Justin tells us it will take about 45 minutes for the scan to be read, and we go back to our exam room. Taz dozes in his stroller while I debate with myself the ethics of commandeering the gurney in the room for a nap. Justin pops in to take Taz's vitals again and tells me to go ahead.

I am out cold for about half an hour before a neurosurgery resident appears. One possible cause of the facial weirdness is a malfunction of Taz's internal shunt; this guy, whose name entirely escapes me, asks Taz how old he is and how many siblings he has. I tell him Taz can't answer questions like that; it's probably a good thing that I'm too groggy to bother testily adding that even if he normally could, sleep-deprived people don't track too well. I can't get Taz to smile for him; I don't feel much like smiling myself, even when he gets around to telling me the CT scan was clean. He says he doesn't think it's a shunt malfunction.

Venturing out into the hall on my way to use the facilities, I overhear Justin on the phone trying to get us a bed on the neurology floor. Eventually he hangs up and tells me that there are no beds to be had at the moment, but we'll soon be out of there. I experience a wild moment of hope that he means we'll be sent home, but it develops that he means out of the ER: it's still jammed, Neurology has decided to admit Taz, and ER wants them to do it already so they can turn over the exam room.

We finally make it up to Taz's room at a little after 2. I put Taz to bed and fold out the parent chair into a not-at-all-comfy pseudobed. I manage to sleep until around 7:15, shortly after which the room fills with a whole packet of neurologists, led by Dr. K, the attending physician on the floor. He tells me they want Taz to have an MRI and an EEG, and that they will be keeping us one more night. I wince; he asks if I would prefer to leave that evening. No, I say, I would prefer to leave now. I manage just barely to err on the side of grumpy humor, and they all laugh. Dr. K says it will depend on the tests, but he'll see what he can do.

The rest of the day passes in a blur of tests and blood draws, none of which finds anything. Having ruled out all the scary stuff (stroke and/or tumor recurrence), Dr. P says the half-smile may have something to do with a recent dosage change in Taz's anticonvulsant, which we upped because he was having frequent seizures. Dr. P is thinking of lowering the dose again or possibly changing the meds, but wants the epilepsy team to weigh in. They turn out to be still on the floor, doing away with the last danger that we'll have to stay a second night, and they opine that if the meds are causing the lopsided smile but also controlling the seizures, that's a good trade.

Bottom line: never mind, carry on. We are discharged with a follow-up appointment next month with Dr. P. We get home around 7:30. I've missed all three Wednesday knitting groups, but Kay's socks now have heels (you didn't think I made it through all that without my knitting, did you?), and sunset over pine woods never looked so beautiful.


  • Argh, what an unpleasant way to get to the "alls well that ends well". So sorry to hear you had to go through such a saga. I'm glad to hear it did, in the end, turn out okay.

    By Blogger Julie, at 5:59 AM  

  • What a long fezzle that must have been for the two of you, Lucia. I'm glad it turned out to be nothing alarming in the end.

    By Blogger Carole Knits, at 8:40 AM  

  • My heart was in my throat through your whole post. I can't imagine how tired and worried you were. Thank goddess we have our knitting.
    Sending hugs.

    By Blogger Margene, at 9:51 AM  

  • All that hue and cry, tests and more tests, and it was just a dosage adjustment issue?... Oh my goodness. I'm glad that your sense of humor is still intact, and relieved that the little nipper is okay!

    By Anonymous Beth S., at 4:24 PM  

  • Wow. I'm sorry for all this but so glad for the relief at the end.

    Sending strength and beautiful skies your way.

    By Anonymous mamacate, at 7:32 PM  

  • Oh Lucia, how scary and tiring that whole ordeal was! I'm so glad things turned out well. Yes, thankfully you had your knitting. :-)

    By Blogger AngeliasKnitting, at 8:24 PM  

  • Wow, what a lot to go through for what turned out to be (thank God) a mild problem.
    I hope all remains well and that you've caught up on sleep! :)

    By Blogger Jena the yarn harpy, at 9:12 PM  

  • Ugh -- I am so sorry that you had such an ordeal. Glad to hear that the Tasmanian Boy is okay, though -- and you're both absolute troopers.

    By Anonymous Erica, at 12:25 AM  

  • Blessings on your dear hearts, You, Taz, DH and Miss B! What a trial for all of you. And thanks for sharing with us. It's an honor to be admitted into the inner workings. At the very least, it puts my daily diddly into perspective, and that's always a good thing.

    By Blogger Roxie, at 10:21 AM  

  • Who Lucia! I think your subtitle might be more like how to freak out mom. I'm so glad Taz is ok. My first thought was stroke, and I was so worried! My friend here has therapy dogs (my dogs are their offspring!) she brings to Boston CHildren's when one of her speach kids needs testing. Would Taz find that calming? I was just wondering if the hospital had any therapy dogs on call.

    By Blogger knitnzu, at 12:37 PM  

  • I'm glad Taz is OK! What a lot of unneccesary panic they put you through, though!

    By Anonymous Carolyn, at 1:54 PM  

  • Oh, I was right down the street, I would have come and sat with you! Y'know for all the hard work I do supporting the pharmaceutical industry, you would think they would have drug interactions better understood.

    By Blogger Mini, at 3:14 PM  

  • I'm sorry you & Taz had to go through this. You are both very brave. Sending good & happy thoughts your way.

    By Anonymous Nicole, at 6:03 PM  

  • oh dear, you have been through the wringer this week. I too have missed too many knitting groups and I'm just sick of being sick. I hope to see you tomorrow.

    By Anonymous Lynne, at 1:55 PM  

  • I'm so glad the scary stuff got ruled out and things turned out okay... Least if you have to be in a hospital, Children's is a not so bad place to be, but I'm glad you're back home again...

    By Blogger SheepsPyjamas, at 4:43 PM  

  • What an ordeal for you all, Lucia. It sounds like you got good care from all concerned, from school through to the hospital staff. Keep on knitting -it's balm to the soul.

    By Blogger Grandma Flea, at 4:08 AM  

  • Holy F-ing Crap.

    I'm speechless.

    Glad Taz not in hospital.

    See you tomorrow for a bit, perhaps...

    By Blogger Liz, at 6:53 PM  

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