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.

Tragedy and Horror in Sandy Hook

December 16, 2012

I'm not sure quite what to write today.  I'm suffering from a broken heart and my soul aches because 20 children and 6 adults were gunned down in cold blood in our sweet little Sandy Hook School.

Here's part of my story, as I know I have been trying to blog Daniel's journey to recovery. 
Daniel came home from the hospital on Monday, December 10.  It was great to  have him home but I tell you it has not been easy.  His pain and discomfort have been almost hard to manage.  He has had a fever now since Tuesday.  Anyhow, somehow through sheer exhaustion I got through the week of sleepless nights to Friday morning December 14, 2012.  Daniel was scheduled to go by ambulance to Yale New Haven Hospital to have the stitches from his spinal fusion removed.  Those stitches run from the base of his neck all the way down to the top of his butt.

I had nurse Marques here early Friday morning, and after Thomas and Sarah went off to school I told Marques that Amy was coming to do therapy at 10:30 and that I would go and get alittle bit of sleep.

I hadn't been sleeping long when my phone started ringing, texting, and emailing all at the same time. The house phone was ringing.  My text message was from Sarah..  MOM WAKE UP  MOM WAKE UP  TURN ON THE TV  MOM

Then I heard the reverse 911 call.  I ran downstairs to find Marques and Amy glued to the TV with looks of shock on their faces.  And the three of us watched, as it all unfolded, the responders at the site, the parents getting their kids, the announcement that 26 people died in the school.  Shocked, sick, and crying I pulled myself together and got Daniel on the ambulance.

We went to New Haven, and since Daniel had fever and congestion they ran a series of tests, (results still pending) so our appointment was longer than anticipated.  The two ambulance drivers, also parents of young children, Marques and myself were all glued like zombies to our iphones, announcing new news as it came out.

By the time we got back to Sandy Hook in the ambulance it was dark.  And the world knew of this horrible demonic act of violence.  An sense of being eery, nervous, frightened and sad all at the same time.  The shooter lived on Yogananda Street which is just two streets up from us.   But also near us are the homes of at least 4 of the children killed.    We didn't know the names of the families until Saturday, but we knew anyway.  Each home had a state trooper parked in front.  And that was the heartwrenching reality check...  "oh my God no, Oh my God no" I kept saying it over and over and over to myself.

It was even difficult for me to concentrate on my Daniel who was, still is, suffering.. and we don't understand why.  My sleepless nights continued.

And for today, Sunday December 16 I think you all know the story.  Its been on the news non stop.  Our little town is PACKED with press, and gawkers, and who knows who else.  And tonight, the president is going to be speaking at a meeting for the families of Sandy Hook School children.

I'm blessed to have Dave (nurse) here this weekend because my sleep deprived brain, and traumatized heart and taking away my ability to focus.   And then... suddenly, out of the blue Daniel starts vomitting, and coughing, and crying.  And its like a slap on my face.

My weak special needs child needs me to be with him.  Its really alot to bear.  I keep wishing and wanting to go out, to be with people, to light a candle, to pray, to go to church, but I am here because Daniel needs me always nearby.  So I sit alone, and I'm not an alone person.   Hug my children.  And watch tv.

So if you watch TV, you have seen lots of images of our town.  And in that town on Bennetts Bridge Road is a house with a state trooper in the driveway.   And our house, with a boy pale and weak recovering from a massive back surgery.

And I don't know what else to write.  It's simply incredible and horrific. 

Please... please pray for us.

Weekend thoughts on Daniels recovery

It's Saturday, I think and I'm seriously losing track of the days.  Daniel is hanging tough.  Breathing treatments, physical therapy, medicine, feeds, diapers, x rays, repeat. 

I just took him for a morning stroll around the floor here in the reclined wheel chair but he is very uncomfortable when we move.  So he is in his chair sleeping and has to get up to 80 degrees today.  Very necessary, but painful.

Everyone has been awesome. I did get manic and "mother angry" last night because I found him sitting in an explosion of poop, but we cleaned it up and actually its a YAY for the boy's bodily functions.  One step closer to normality.

So I think today is December 8, 2012.  You really do lose grip on reality and the outside world when you are in the hospital.  

Today Nana and Grandpa should be coming to visit, which will be excellent for me because I know Daniel will like that and I am hoping that they bring me food.  I don't feel comfortable leaving him to get food like I did when Dan was in the ICU.

Based on the current state of things, being on track as predicted, Monday may be discharge day.  But then the hard part really begins because the recovery shifts into my hands.  A hospital bed will  be delivered to our house.  I think its going to have to go into our dining room.  And I will basically live downstairs with Daniel as long as I have to.   His bed in his room, is a great bed but it only elevates head and feet...we need one that lifts him up and down. 

Maybe I'll hang some Christmas lights on it.

Children like Daniel are incredibly special, and innocent, and gentle.  It is mentally rough to have to put them into a situation like this which means great great pain and spasms.  He doesn't understand, and his smile has completely disappeared.  I miss his smile and giggles.

*************************************************************************

Sunday Morning, December 9, 2012

I woke up to the Orthopedic residents visiting to check on Daniel.  From what I understand a fever is not a fever if it is 100.6 or 101.00 or less, I guess.  Although Daniel was feeling pretty hot to me.  They don't worry about it.  I just wonder about what his body is feeling.  It's hard to be Mom in the hospital with a concern that simply doesn't concern the doctors.  I do know they have more experience with surgerical patients, but I have more experience with my Daniel.

Its quiet, its grey outside.  I am wondering when they are going to take his x rays that are needed before he can go home.  We also have to rent a hospital bed for home, so that we can easily take care of him. I told John to stay home today, and save on expenses but maybe I'm going to change my mind later when I'm hungry for food and company. 

I am enjoying the solitude as Daniel sleeps, as I know that home will mean busy busy busy.  Christmas is coming, and thankfully/hopefully we will not spend Christmas in the hospital again.  But in a sense we are bringing the hospital home for Christmas!! 

Scoliosis,  who knew.  10 years ago his spine was perfect and straight and his hips were in need of surgery.  Never even thought we would ever have to do this.  But time just went by so fast.

Being in the hospital with him, I've met many people.  All of them kind and caring.  We are not alone in the universe with our problem, there are very sick people around us, kids who have been injured, kids who have had surgery, kids with cancer, kids with RSV in restricted contact rooms.  I sometimes try to envision the rooms of the entire hospital and imagine I am a bird quietly flying over all of them scanning them and praying as I go.   I believe love and prayer can spread like an epidemic if we open our hearts.

Its not an isolated incident, what we experience, everything is connected in some fashion.  We are not alone in the universe, we are connected as brothers and sisters.  Some people sadly shut off to others, and yet sometimes a magic connection happens that warms your heart.  Sometimes in the most unexpected of ways.

Its been a crazy week.  Its been a very interesting and long week.  I am ready to go home.  Home is where love lives and healing will complete itself.  Daniel is a catalyst that holds together the selfishness of want and the unconditional feelings of gratefullness and pure love. 

There are so many people I want to thank, and so many people that have extended response to my asking for help.  I don't feel uncomfortable about going out on the limb of life to ask for help.  Because I know I am a child of God and that I am only as good as my faith in Him.  And I know I can not do this alone.  We are not alone in the universe.

From 12 noon until 2pm the unit we are in, 7-2, shuts down the lights and has quiet restful time.  It is as if peace just settled over the hospital.  Calm and quiet.   Praying time.  Sleeping time.  Thinking time.  And in my case, writing time.

BEFORE

AFTER

Scoliosis (from Ancient Greek: σκολίωσις skoliosis "obliquity, bending")[1] is a medical condition in which a person's spine is curved from side to side. Although it is a complex three-dimensional deformity, on an X-ray, viewed from the rear, the spine of an individual with scoliosis may look more like an "S" or a "C", rather than a straight line. Scoliosis is typically classified as either congenital (caused by vertebral anomalies present at birth), idiopathic (cause unknown, subclassified as infantile, juvenile, adolescent, or adult, according to when onset occurred), or neuromuscular (having developed as a secondary symptom of another condition, such as spina bifida, cerebral palsy, spinal muscular atrophy, or physical trauma).

 

 

 

Spinal Fusion Journey to Recovery Days 5 and 6

Friday, December 7, 2012

Here I sit, in another room, in the quiet.  Well, there are some annoying beeps and buzzes coming from somewhere. Typically once you get to the floor after the ICU there is a culture shock adjustment. The level of care is good, but the attention you get is much different.  And that is good, because rest is needed.

Yesterday, I was beyond exhausted and decided to head home to see Sarah and Thomas and get some much needed sleep.  A friend brought by a fabulous hot cooked dinner just as I pulled into the driveway after picking up the kids.  We ate dinner, and all three of us were sleeping by 9:00pm.

Then the coughing started.  From Sarah.  By morning she had been coughing in her sleep most of the night, keeping me awake.  So much for much needed sleep, home was just like hospital.  She had a fever in the morning and I kept her home.  Waited for Thomas to get home and then headed back here to Yale to switcheroo with Daddy.

Daniel had a rough first night on the Pediatric Floor, his respiratory situation went south and his oxygen levels were going into the mid to low 80's (this is bad).  But the respiratory people came in and suctioned him like crazy (this is good) and he began to breath better.

His eyes were itching him like mad, and John didn't know why or how to help him.  They gave him benedryl (which he isnt supposed to have due to how it affects seizures) But he slept well once it kicked in.

I got here today with Thomas who was anxious to see his brother finally.  Took one look at Daniel's eye and told the nurse to get the doctor in here because its pink eye.  I was right, they ordered the antibiotic drops.  Dr. Mom strikes again.

Pain is still an issue, as it will be for a long time.  Daniel will be in his wheel chair again tonight (the reclined one) and its good for him to be up in the chair.  His pain meds are all via the g tube now, and he has restarted his g tube feeds today.

It's Friday, and over the weekend they will watch him, take more x rays, and make a decision about discharge possibly Monday or Tuesday. 

This boy is a super Trooper.  I can tell you that.  I know he is probably wondering what the hell did they do to my back!!!   But, God willing, it all turns out for the best.

I really wish someone in this hospital would silence that alarm before my head explodes.

So its day 6.  Its been a long scary, exhausting, emotional week.  And now we are facing the rehab part at home, which will be somewhat daunting as well due to the fact that transfer requires two people VERY CAREFULLY lifting him so as not to pull at the hardware in his spine and anchored to his pelvis.

I never should have had a large coffee so late.  I'm jittery.  Just waiting for our nurse, Hope (nice name) to come in and help me get him into the reclining wheel chair.  I can't do it by myself.

I'm still wondering how many inches the surgery made him grow. I'm guess about 3 or 4.  It's wild.

Mom and Tom arrive at the hospital to relieve a very tired Daddy