Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Sunday, May 01, 2011

Not a Lovely Day

nice braids!
Friday was quite a day!!  It started off a bit frustrating.  I woke up needing a shower something fierce!  So after meds and breakfast I put Nadezhda and the dog, Drake, into her room which is highly childproof.  I had a hot shower, got dressed and opened her door only to find her holding something.... brown and round.  Yes... a dog poo.  Our doggy hasn't "gone" in our house in months and months.    Anyway, She was seriously holding a poo, there was also one stuck to the hem of her pants and a couple on the carpet.  (Dad, don't barf).  I immediately washed her hands and feet with soap under running water then plugged the tub and gave her a good bath.  We spent the next 20 minutes or so braiding her hair (which was my best braiding ever) and getting her ready for school.  I took her to school at 10:30 and said good bye.

So next, I took our car to get check out at valvoline.  They did an oil change really quickly but couldn't find the cause of the strange click, click noise that just keeps getting worse.  So I took the car to the guys who fixed our water pump last time we had car issues.  I gave them the keys, went for a walk, and came back to sit in the waiting room.  Half an hour later (car was still not in the garage) I got a call from Ms. Elery, Nadezhda's teacher.  The first thing she said was she was not calling about a seizure!  She proceeded to tell me that Nadezhda's finger had been closed in a door by another student and that she was bleeding a bit and was crying.  She asked what I wanted to do.  It only took me a half second to decide that I would come get her.  My half-second dilemma was because I don't want to swoop in to coddle her for a slightly pinched finger.  But I decided that I would go check it out.  So I went to the counter, quickly explained my situation, and got my keys back.

I started to think about her finger being squished by the door and bleeding.  Since she was born, the sight of her blood makes me sick and light-headed, so I started to get a bit queasy.  I called a sister (-in-law) who has a calming effect on me and she reminded me that I need to stay calm for Dezh because her reaction to her injury will reflect how I act about it all.  I thanked her and hung up the phone.  A minute later my brother called back and gave me some "Combat Breathing Techniques".  He is an officer and has been trained to handle stressful situations efficiently.  His tip was the following (give it a try next time you have a taxing situation) :

     Breathe in through your nose (4 seconds)
     Hold breath in (4 seconds)
     Breathe out deeply through mouth (4 seconds)
     Hold breath out (4 seconds)
           Then repeat till situation is over or until you 
           are in control of yourself again, I guess.

So I did my newly learned "combat breathing" until I got there.  I went into the school to find her sitting on her personal assistant's lap.  They had her hand wrapped in gauze and covered by a rubber glove.  Her finger was also on ice.  I stayed pretty calm but had to continue my special breathing because I saw big blood drops on her clothes.  GROSS/SAD.  

Turns out, that a Dezh had her thumb in the door on the hinge side I think (probably using the wall for balance).  One of her classmates was coming toward the door and Dezh's assistant told him NOT TO SHUT THE DOOR.  Unfortunately, he is somewhat hard of hearing and only heard SHUT THE DOOR.  So this huge, heavy, tight-sealing door closed right around my baby girl's thumb and pretty much popped it.

Her assistant suggested that I take her to the doctor and that it was more than just a pinch in the door.  She said it was a "flesh wound" and the "nail was more OFF than it was ON".  UGH.  So I called the doc and made an appointment.  We had an hour until the appointment and I could tell that she was getting hungry, tired, and was worn out from the physical stress of her injury (all are seizure triggers).  I could see that a seizure was just around the corner.  So I gave her a pediasure (I almost always have one in my purse these days) and asked for her lunch.  Her personal assistant offered to come with us to the doctor so that she wouldn't pull off her bandage.  The assistant also fed her lunch while we were driving to the doc which helped her to be more alert and happy.

At the doctor, they called us in quite quickly.  As soon as they unwrapped the bandage to take a look, they told us to go to the ER.  I think it was at this moment that I learned it was actually her thumb that had been smashed (the gauze padding was covering her whole hand, and they kept saying it was a finger).  I also peeked at it and had to do more combat breathing.  We packed her up and I went to the ER while the assistant went back to school with another teacher that followed us over.  Curtis met Dezh and I at the ER.  They took us in pretty quickly and looked at the injury.  They determined that she would need to get some stitches.  But since she had just had her lunch we would have to wait 6 hours so that she wouldn't aspirate if they had to sedate her to get her to hold still.  I guess that is a pretty good trade off though - having to wait 6 hours because we fed her, but not having a seizure, ya pretty good trade off.
gross thumb.  2 hours after initial slamming of door.

She started getting really angry every time they unwrapped and rewrapped her bandage.  I don't blame her.  THIS IS WHERE I INSERT MY OWN SIDE STORY:
       I recently slammed my thumb in our car door,
       which has that black tubing/padding stuff.
       It hurt like a mother and I said some words that
       would have made my parents cry.  It was 
       so very tender for a week or two.

Tons of Doc's looked at her thumb, and it ticked her off, like I said.  They ordered x-rays of her thumb while we were waiting for those six hours.  Poor kid.  Her thumb tip was fractured!  The doc's said that she would need to get her thumb all stitched up to get the nail eponychium (what our finger nails grow out of; lower into the finger than the cuticle) back under the skin and to help the cut and fracture heal.
(For anyone wondering what happened to the poo in her room, I picked them all up quickly and flushed them down the toilet.  Then during our 6 hours of waiting, I went home and cleaned up the poo with spray cleaners and rags, then I vacuumed after all the scrubbing.)

getting sleepy around 6pm, waiting for surgery
she fell asleep just as the doctors were coming in to fix her thumb

Finally around 7 pm, the doctors assembled and had their "time out" discussion to be sure they were all on the same page with her treatment.  She fell asleep just as this was happening so they only gave her a very small amount of propofol anesthesia.  They also numbed up her thumb with a REALLY BIG NEEDLE.  This is when I started to combat breathe again.  I ended up just leaving the room cause it was so gross.  Curtis stayed to watched the whole thing.  He said they put a suture through her skin and nail eponychium and then gave it a tug to get the back under the skin.  They also did some stitches in her nail bed and finger.  Then they glued her nail back onto the finger, over the stitches for added protection to the stitches and finger.  Then they wrapped her up!

She came out of her sleepiness after a few minutes.  We were able to feed her dinner and her meds.  As soon as dinner was finished, they discharged us.  We took her home and let her sleep in her own bed.
She has been very protective of her left thumb and hand.  If we mention her bandaid or move our hands toward it she will swat at our hands with her right hand.  Poor kiddo.

Her doctors told us to leave the bandage on until Wednesday at her follow up appointment with a plastic surgeon.  They also said the fracture should heal fine because she has been stitched up tightly which should hold the lil fracture in place.  They said her thumb nail may fall off but that a new and healthy one will probably grow back in to replace it.  They said that her nail may not get as long as it is was or that the nail may split when growing back in if the skin seals together where it shouldn't, but they said that this is a common surgery that they do on kids very often and that it should be just fine!  I surely hope so.

Today at church, she was so wiggly and in Primary she started to whine and cry and was too upset to stay any longer so we took her home.  She is sleeping soundly now even though it is not her nap time yet.  I think she is just worn right out from such a crazy weekend.


  1. Poor Dezh and poor mama! Injuries to our babies are so stressful and I totally believe that our reaction has a huge impact on how our kids will take it.

  2. Ouch!!! Poor Dezh (and you!) Praying that it heals quickly!!

  3. What a trooper! I'm so glad you had your combat breathing to use. Glad Dezh will be ok...that is scary! Poor kid. She's just been through so much in her short life! You guys are always in my prayers. Love yall!

  4. Ps. 140:12. I know that the LORD will maintain the cause of the afflicted, and justice for the poor.
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    Note: Only ONE click is needed. If I ever ask you again for the click please never ever click again.
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    God Bless Your Family

  5. Sounds like a terrible, horrible, no good, very bad day.
    UGH! You, Dezh, and Daddy are warriors!

  6. Hey! I found your new site via Lyndsey's blog. (Don't blame her for my nosiness though.) Oh MY GOSH!! I had no idea this happened to Dezh. I am soooo sorry. I think I've just been occupied by my own wacky life. I've been a lame friend lately. I need to ask more questions :).

    What a freaky, scary, difficult day! You are all troopers.