Home to Sandy Hook and healing

On Friday, January 11, 2013 Daniel was discharged FINALLY and we returned home.  It is suffice to say the exhaustion was incredible and I think both Daniel and I slept for  12 hour clips.  Adjustment to reality has been a long process.  I began to feel like I was engulfed in a post traumatic stress situation.  But as the days have gone by, slowly but surely I am starting to feel like myself again.

Daniel started violently vomitting on January 14.  It almost prompted a return to the hospital.  But he stopped as fast as he started.  And I hoped it was just a fluke.  His mood has been good, no fevers, so happy and cheerful.

On Saturday, January 18 it happened again. This time worse.  An all day event of violent vomitting and diarreah resulting in a near "pack it up" we are going to the ER.  But we ran him on clear pedialyte and by Sunday he seemed perfectly ok again.  It's insane.  You almost wish he would either BE clearly sick, or NOT BE clearly sick.  With Daniel its an inbetween grey area that never EVER shows a bit of consistency.  That is what makes falling into any kind of a routine basically impossible.

Somehow as I sit here at my desk this morning, I am working through these piles and piles of bills and letters and I know at the end it won't be the prettiest sight.  But Sarah's financial aid forms need to be completed on line, which means I need to do my taxes.  Now even the accountant does it all on line which makes life so much easier.

I didn't work, well, since back in November.  Thursday the 16th I worked 5 hours at the NYA just to check my mental sanity.  It was good, but sad.  I saw one of the Mom's who had lost a daugther because I made her a protein shake.  And I realized that my adjustment is no where near as hard as hers.  SO hard to fathom how to keep your spirit up enough to get to the gym, but it is really helpful to keep moving.  (I need to take my own advice.)

Today is Martin Luther King Day. Kids are home.  I have piles of piles.  I have laundry.  They are all wanting me to do something for them.  But I still need to go to my AllState office where I worked with Jon until Jon passed away the day after Christmas.  I am hoping I can still work there with Larry, to help out in any way that I can.  I've been so sad about the loss of my friend Jon that it's been hard to get to the office.  I'm supposed to be studying for my Property and Casualty license.  But after the shooting here in town, I just don't seem to have enough brain diversity to do so many things.

Plus, Daniel's life is very very time consuming and involved.  So its all alittle crazy and stressful. 

Priorities, are Daniel's recovery and Sarah's college financial aid applications and filing my taxes. Yippee.

Depression sneaks its way into my veins now and then, and I hate when it does because I start to feel like its all just a hopeless mess.   But, resilient am I.  I learn that from my Daniel.  And I will keep trying to do the best I can.   I can't work full time,  its just not humanly a reality.  So I have to keep this fragmented multi faceted role going forward into the future. 

Maybe my dream of nursing school will become a realtiy someday? I don't know.  I will keep in on my goals. 

Last night, Daniel cheered my soul with his laughter.  So much laughter.  And then he fell asleep.

Have a great day.  Thank you for your continued prayers and support for us as we do our best to raise and care for this very special kid.  He is so awesome.  

Day 32 as a guest of this hospital

Slow but steady heals the pancreas, and hopefully the heart.  Yesterday Daniel had music therapy, and I think I definitely want to pursue this. He did very well and seemed very engage in the music.

It is Wednesday, January 9, 2012.  Daniel has been slowly SLOWLY weaning back onto his regular feeds and seems to be doing fair.  He has occasionally been wretching, but he doesn't seem anywhere near as upset as he did back on December 17 when we came in for the Pancreatitis.

Oh how long its been.  I really want to go home. I've been here staring at walls and ugly views..napping in between doctors and nurses coming in and trying to keep my mind from turning into mush.

music therapy

 Today Daniel is on 100% strength of his regular feed at his regular rate.  And I have to watch him very closely to see if he has any upset.  Labs will be drawn tomorrow, and if bad...then an ultrasound is needed.  If good... then we can start talking discharge.  

I look completely exhausted!!!!

I am doing the best I can. But you never sleep well in a hospital and I'm stir crazy in this room.  Last night a little child was screaming and screaming in the room next to me. I didn't recognize the language, but I knew the child did not want ANYTHING to do with his nurse.  It was so loud he may as well could have been in our room.

Music therapy

TPN nutrition still needed

trying to keep Daniel engaged

Whatever we can do to get his hands busy

But he has a hard time staying awake for long

Sweet baby shouldnt have to go through as much as he does

Staring at the sunshine through the window

Trying so hard each day that I wake up, to clear my head and live in the moment. But knowing that home is place that is also trying to heal and go forward, seems like a sad coming home.  But home is home, and the people are the same.  Hearts are just broken.  I have been so focused into getting Daniel well that falling back into a normal routine almost makes me feel depressed.  I don't really know what to do, or which way to go.

I'll find my way.  The one thing that remains constant is how much I love my family and love being a wife and Mom.  You think so much when you have so much time to think.

January 2013 Starting the year the way we ended the year

He and I are here.  It's January 4, 2013.  A disney movie plays on a portable xbox station.  Balloons are all starting to deflate.  The sounds of beeps and buzzers are now background noise, and when the doctors and nurses come in, its like seeing old friends.

He is in his bed, and his tummy is hurting but his smile lights up the room.  It was not too long ago from this moment that I really missed Daniel's smile.  A pink pitcher with ice water, the daily platter of fruit, donuts, and muffins.  Fairly bad coffee that has become quite good.  Two small suitcases that rotate clothes back and forth to home.  A bathroom that looks fully equipped with our stuff.  Piles of bills to pay, cards to write, books to read, and magazines.  The same ugly view out the window.  The same scratchy white towels.  Friendly faces, and helpers when needed.  Every single person says "can I get you anything Mom?"  Because in the Children's hospital they don't bother to learn your name, you are either Mom or  Dad or sister or brother.  Phones ring in nurses pockets and they answer "7-2" then rush away to where ever they are needed.  6:00am the orthopedic docs come in, and turn on the brightest of lights, smelling of strong cologne which contradicts their maroon scrubs, they check Daniel's incision and leave, usually forgetting to turn off the lights.  And the yellow protective gowns and gloves.  Being a "contact precaution" room is hard because everyone who comes in here has to cover up.   Daniel tests positive for MRSA....and therefore he can not leave his room at all.   Respiratory comes in to do breathing treatments twice a day.  Always a different person. 

One day a nice friend had a bag full of goodies delivered to me from the gift shop downstairs.  Magazines, cookies, slippers, a teddy bear...etc.  And then I pull out the People Magazine.  And I am home again.  Home to the sadness because on the cover of People are the faces of those angels we lost on December 14.