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.

PAIN-cre-a-titis Happy New Year Wahoo

December 30, 2012

It is Sunday evening, the 30th of December.  While so many people still have their holiday decorations lit up and plans with family and friends, we are just managing life between here in Sandy Hook and where Daniel is at Yale in New Haven.

This morning he was wretching pretty badly again.  And after just having learned that his pancreas enzyme numbers were trending back upwarrd, it was honestly pretty heart wrenching.  Daniel has been in that room since Monday afternoon December 17, 2012.   And after 2 weeks, his illness still has not resolved.

In the meantime, John has had to go back to work.  And Sarah and Thomas have lives that must carry on.  As I sit day to day in the hospital the days all blend into one, while at home people are helping shuttle my kids around and meals are being delivered.

I recently just learned that a friend of mine, who hired me to work in his AllState office in Monroe, CT passed away suddenly from a heart attack on December 26.  Leaving his two little girls behind.  So sad.

It's a world of hurt out there.  And I don't know about alot of other people, but I still can't seem to lift the fog off of my brain.  It just hasnt been  holly jolly time at all.

This morning at the hospital I met a family whose little baby was born with a severely deformed face. The little tyke had these adorable cheeks, blue eyes and red hair.  So many surgeries, and the results were amazing.  So sweet that baby.

I can't even wrap my head around all of the emotions that I am having as a mother right now.  Especially a mother here in this town where we are raising our kids.  But like I said I feel like its a fog.  A fog I can't get out of.  And I have no time to try because my energy is spent on trying to find out how to get Daniel better.

A random act of kindness came upon me yesterday.  As I sat in my room, watching the snow heavily fall outside, I knew not a soul would be coming to visit us.  Suddenly a bag with a shiny balloon was delivered from the giftshop. In that bag were magazines, cookies, fuzzy slippers, a GET WELL Teddy bear, crossword puzzles, etc.   A wonderful friend, who knows how it feels to spend extended stays in the hospital had it sent to Daniels room.   I am so touched...  I just want to do the same for someone else.

I had wanted to do the same for you my friend Jon Haydostian, but Heaven had other plans for you.  Rest in Peace.

I'm sad and disorganized in my thoughts tonight.  Probably the Sandy Hook syndrome.  I just feel like the sun needs to come out and dry up all the pain.

This hospital stay is a killer on my family.  In everyway possible...but I am home for my two nights of resting and sleeping before heading back to the hospital again. 

So with that said, as I lay here resting without the sounds of beeps and pumps and nurses coming in and out, I will lay my head to rest. 

 

Christmas and a PIC line



At the ER on December 17 wondering what was going on.



Well.  It's December 26, 2012 and we just spent our second Christmas in a row as guests in one of our state's prestigious homes of healing, other wise known as hospitals.  Yale New Haven Hospital has been treating Daniel for Pancreatitis since we were admitted on December 17th.  Just having come home from his spinal fusion, it was not thrilling to end up back here.

In a nutshell, Christmas Eve... I stayed home with Sarah and Thomas. Got the gifts done, set it all up, missed Daniel and John terribly. Lit a luminary to remember the ones lost on December 14. And felt sad as a light mist of snow fell upon the town.

Christmas morning at home with Sarah and Thomas

A light snow gave a Christmas feel to a very sad Sandy Hook

Christmas was special simply because we all have eachother.  Even if we can't completely be together we know that we are going to be soon.  I hope.

Daniel went into surgery to have a pic line put in (into his arm) so we can feed him nutrition through an IV.  He did much better with the pic line procedure than he did with the Central line procedure last week.



After I finally got my PIC line put in on December 26, 2012



9 days in the hospital and counting. 





Amazing Artwork in the lobby




 I've had to deal with many emotional mind fogs.  I was lost and couldn't pray.  The hospital sent me an angel, her name was Kristin the hospital chaplain.  And she brought me a book of Psalms and the New Testament to help me cope.  Its been helping...

Yale New Haven Childrens Hospital.  We have spent most of December here.  A December the world will never forget.   And we are still here.  Daniel is still in great pain with re introduction of feeds.  And this hardship on our separated family is making us grow weary.

"Come to me, all you who labor and are heavy laden, and I will give you rest.  Take my yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.   For My yoke is easy and My burden is light."  Matthew 11:28-30

Sandy Hook CT, 26 angels, the road between Yale and Sandy Hook, Pain and Pancreatitis

December 20 2012

We have lived in Newtown since 1994.  All of our children are growing up here.  We love this town. When Daniel was diagnosed with his disability and we knew he would never walk...we found a new house and moved from Newtown to Sandy Hook.  Our home is surrounded by beauty, country roads, lovely old homes, scenic farmland, horses grazing, and most of all wonderful loving families.

When we lost a young man, a dear friend and neighbor, in 2008 and had to say goodbye to a 13 year old precious 8th grade boy, I remember feeling that there would "never be a moment so full of grief and sadness in our town like the day of that funeral."  Our Brennan Merrick, who left Sandy Hook on November 8, 2008 and is missed and thought of every single day.

But on 12/14/12, an enormous storm of tragedy fell on top of those old memories of sadness, joining them and making them grow into a worldwide horror.  And the surreal nature that there were more in our neighborhood who would be buried.  So many more.  Has transformed us  with so much sadness and shock.  The world responded.  And I picture Brennan, in the heavens, holding hands with 20 little children laughing and smiling.  I do not envision them sad, I see them as light.  As peace.  As pure a form of love that there ever could be.

But yet... it hurts.  This is my neighborhood.  This was my children's school for all of their elementary years.  I remember how the little school smelled, looked, and all of the fun memories that are documented in my years and years of photographs of school concerts, events, fairs, Mothers day tea, One school one read, Walking Wednesdays, Brownie troop meetings, Halloween parades, Wax Museum day, and on...and on... and on...   Sandy Hook School is part of who we are.  Its a very important part of who we are.  But its not "the building" it is the people who teach and love the children.

What happened on Friday morning, 12/14/12 tore away at the very core of how much we love those people and that school.  And the loss of those precious children was a reality that shocked us, and ripped our hearts out.  We all feel sadness, at different levels, at different times... but our town...our entire town of Newtown is grieving, and hurting.  The pain is there, in the stores, in the schools, on the streets, in the churches.  We can't do anything to reverse time, and all we can do as humans is take steps forward into time.

At the same time, on December 14, 2012 Daniel...who had been home since December 10, after his successful spinal surgery, began to vomit.  Began to cry.  Began to scream and cry.  We took him via ambulance to have his stitches removed and he clearly was upset so the doctor ordered blood work and chest x rays.  That was Friday.  We we returned every news station showed our town.  The killer lived on Yogananda!!! How could THAT be true...so close to our house.  And although the names had not been released, we knew that the state trooper at the end of the McDonnell house was not good news, and the state trooper in front of the Pinto house, and the Kowalski house, and a feeling of gut wrenching pain.

And ironically, Daniel was feeling pain.  SO much pain.  All weekend.  He was wretching while our hearts were wretching.  And I had all that I could do to keep my focus on Daniel.

On Monday morning, December 17, 2012 at 6:30 am the hospital called to tell me Daniels bloodwork did not look good and that I should bring him in.  I decided to take my other two kids out for a quick visit to the memorial and have breakfast before we left for Yale because I knew we wouldnt be coming home.  The nurse stayed with Daniel.  Sarah decided not to go.  And Thomas and I bought flowers and went into town.   The amount of reporters and photographers was very unsettling, awkward, and uncomfortable.  We wanted to privately do this, and yet there was a circle of cameras focusing on everyone.  Had a quick meal at the Sandy Hook Diner and got out of downtown as fast as we could.

The ambulance was called for the transfer, I packed a bag, reluctantly kissed my children goodbye and headed off to Yale Children's Hospital Emergency room.  Daniel still wretching, but on heavy pain medication.  His wretching was certainly hurting his spinal surgery incision, I'm sure.

BALLOONS FROM COUSINS LACY AND JASON CABRAL

And we were admitted.  Monday afternoon to room 242 on 7-2...that is where I sit writing.  Daniel's pain was increasing, and they couldn't determine what possibly could be wrong because his incision looked perfect. His lungs were clear. He had no fever.  So the doctor ordered a full work up and somewhere in the night they told me he likely had something wrong with his pancreas.  The vomitting got worse, and he would not stop crying.    I had the pain from Sandy Hook and the pain from Daniel's tears sucking the breath out of me.

We finally stopped his feeds, and let him rest.  They sent us for an ultrasound yesterday, and it did verify a very inflamed pancreas.  Especially since Daniel screamed when the technician touched his abdomen.  Awful.



Mac the PMG monkey



Cards from STARR volunteers and classmates at Reed Intermedicate School, Newtown

Today is Thursday, and I never dreamed we would be here this long.  But he needed to be taken off of his g tube feeds, which posed another big problem, his nutrition.  He is so thin, and he is healing from major surgery.  Not feeding him is making him week.  He is pale, feels horrible, can't take a breath without a wince.  So they put him back on IV pain medication.

And here we sit. So close to Christmas.  Feeling like we did last year when our entire holiday was spent in the ICU.   I have nothing ready.  Have no gifts wrapped. No cookies baked,  No Christmas cards to send.  No gingerbread houses made.  Instead I'm sitting in the hospital.  Praying for my community.  Not even thinking about any kind of celebration.  Except the fact that its the celebration of the birth of Jesus.

Incredible.  The events of this week.  In my ordinary blog is description of the most incredible horror our nation has seen.  In our little town.  In our little school.  To our little people and their teachers.

Pancreatitis has caused Daniel great pain.   Pain is a term that can be so far reaching, or so specific. 

We wait to see what will happen.  Daniel may need to have a PIC line placed to receive IV nutrition because he isn't tolerating his liquid formula in  his stomach.  He needs nutrition in order to heal from his surgery.   And I'm simply sitting here, wondering.  Praying. Thinking. Hoping. 

I have not dared to open the mail, or look at my bank account.  I just don't want anymore fear right now.  The pressure to get by is relentless, stressful, and my brain is not in the mood.    We will do Christmas, I'm sure, for the sake of the children.  But we do not feel "tidings of comfort and joy".

Peace and Blessings to Sandy Hook, CT.    May the angels embrace us in their wings.