STEVIE'S BIRTHDAY GIFT...

...was a day at the mall with her best friend/cousin Abbey.  When I asked Stevie what she wanted most for her birthday, she said "Escalators and Skinny jeans".  You see...our shopping up north consists of mostly hand-me-downs.  (which we are SO thankful for)  Very rarely do I have to buy clothes for my children.  (thankfully because I LOATHE shopping...always have, always will.  It's not in my genes)  So needless to say, Stevie doesn't have a lot of experience with "MALLS" or shopping for that matter.  She's only seen them in movies.  Her wish was to spend the day with Abbey and go to a mall that had an escalotor (or two) and purchase some skinny jeans.  

BEST.BIRTHDAY.EVER!!!

(so says Stevie)

TRADITIONS

Friday MOVIE NIGHT on my bed.

(snacks included, and sometimes self portraits...cuz they're fun)

THE APPLE...

...doesn't fall far from THIS tree.

This is me post surgery with a sticker lead that I peeled off after only 3 hours.  A week later I STILL had welts.

Saturday Stevie had a basketball tournament.
The team wore 'warrior paint' under their eyes.
Sunday I noticed the red marks under her eyes.
Monday they started to look like welts.
Today they were even puffier.

I bought her some hydro-cortisone cream

and tonight they looked MUCH better.

The good news?
I exagerrated the truth by telling her...

"It's really a bummer, 

because it looks like you're ALLERGIC to make-up."

DARN!

MY DAUGHTERS

LIVE, LAUGH and LOVE

That's how we roll.

DARTMOUTH DAY

Today I took my boys up to Dartmouth for some appointments.  Kaleb had his audiology test which...get this...came back NORMAL!  WHAT?!?!  Could this be why Kaleb's been balking at wearing his hearing aid...telling me that "Mom, I can hear fine without it".  Who knew?  We saw his ENT doctor right after and he was just as confused as we were.  He's never had this kind of result from surgery before...where one month he has a normal hearing test, the next it's poor and then good again.  How do you explain that to the teachers at school?  How do you work around that kind of result where one day he may be hearing and another day he doesn't?  Because of the inconsistency, he'll be going back under for a second surgery.

Benny.  He's a rolling Darth Vador.  It makes me giggle.  Everywhere we roll, you can hear his mechanical breathing.  What I don't find funny is the valet parking at the hospital lately.  They've always been so accomodating for 'handicap and elderly parking'.  The last couple of times we've gone, there have been some new guys.  I pull up to the curb and start to unload my cute package - wrapped up in tubes, wires and machines.  When the long process is complete, I stand there...in front of my car and look at the valet guy who just stares back.  I have to go up to him and practically beg for him to park my car.  He says to me..."uh, this is for disabled people only".  Wow.  I was totally speechless as I stood there with my completely disabled child.  Really?  So then I name drop and ask where 'Art' is...he's the one that has always cheerfully parked my car for me.  "Oh, he doesn't work here anymore...but he parked for you?"  YES I tell him.  I hand him my keys, tell him how much I appreciate him doing that for us and walk away feeling like I've just totally inconvienced a paid hospital employee.  (sigh)

Ben was there for a kidney ultrasound, repeat urine culture and a last minute pulomonology appointment with an added x-ray.  Made for a long day.  In the middle of it all I had to call respiratory to come help me with a vent problem.  While he was working with Ben, he stopped breathing and desaturated.  I was laughing at my son.  He likes to show off that way.  The therapist ran to get him some oxygen and by the time he got back he pretty much resolved on his own.  
Good times with Ben.

FOUND ME A SURPRISE!

A few hours ago I started thinking about WHAT to make for dinner.  I haven't been feeling too well and so I have been procrastinating the inevitable.  MOOSE!  That's what I'll make.  A while back some good friends of ours gave us some deer and moose meat.  I was in the hospital with Ben at the time and so Steve put it away in our freezer.  I love wild game.  Especially when it's FREE!  I decided that we'd dig into our stash and have some moose.  I remember seeing this bag and thinking it was part of the wild game - not sure why.  Probably because it was with the rest of it.  (if I had put the meat away, I would have known it wasn't)  So today I opened it wondering what kind of meat it was.

I found it particularly odd that it was in a cloth bag, but whatever.

So when I opened the bag, I saw the words CHOCOLATE.  Then I immediately thought I had a GIANT chocolate bar that I had just come across - SCORE!  Then part of me felt guilty for not finding it sooner so that I could THANK our dear friends for the meat AND chocolate.  (this friend of mine often showers me with gourmet chocolate, so it was no surprise that she would do that)

Then I opened the bag and saw THIS.  It's better than chocolate, I promise.  It's a book that my mother and I pass back and forth.  (I blogged about it a long time ago here)  It's like chocolate for the soul.  Makes me feel good to read her notes that are written just for ME.  I love it even more that we've turned it into a game.  When we write in the book, we then hide it in a place where we will eventually find it.  Like today.  In my freezer.

It's a tradition that I love and hope to carry on for a long time. 

Thanks mom...I needed this today.

xoxo

WHY COME?

I have been asked MANY times why I don't have any nursing for Ben.  It's simple.  I'm selfish.  I want to be his caretaker.  Because I LOVE taking care of him.  I don't feel like it's any harder than my other children, just different.  I'm not saying that people shouldn't have nursing, it's just not for me.  From the beginning of Ben's life, the hospital begged and pleaded for me to get nursing.  I kept refusing.  I just didn't want it or feel like I needed it.  We were just fine.  Then at 15 months Ben got his trach.  We were in the PICU for 12 days while he recovered and we learned how to take care of it.  While there, the hospital told us we NEEDED nursing.  I still said no.  They begged and told me to atleast try it because if I refused it then, it would be harder to get it later if I decided I wanted it.  FINE I told them.  I would 'try' it.  So they sent us a nurse, actually she was an LPN.  She was a grandmotherly type lady in her 60's and was as round as an apple.  She was nice, and I know that she loved Ben...but from day one I hated it.  It's not easy having a stranger in your house for hours at a time, days on end.  I continued to be miserable for 6 months because I didn't want to hurt her feelings by telling her that I didn't really want/need her help.  Because I am somewhat of a control freak, I made her job really, really easy.  I always had his meds drawn up, food made and had him bathed before she arrived.  All that was left to do by the time she walked in the door was to hold him.  She was a glorified babysitter.  I hardly ever left because I never felt comfortable doing so.  One time Ben had the hiccups...with a trach it manifests a little differently.  BUT, they are rhythmic just the same.  I was downstairs folding laundry and she completely panicked when he started hiccuping.  I had to expain to her what they were and that he wasn't breathing funny.  (there are no sounds with a trach, just breathy noises)  Another time Ben's 'cage' popped off when he coughed and because she didn't put it back on, his chin covered his trach hole which made it impossible to breathe.  He was turning blue and visually gasping for air that wouldn't come.  I was upstairs at the time and again she panicked.  When I ran down to see what was going on, I noticed his blue cage on the ground.  I had explained to her before that if it ever comes off, it needs to be put right back on because he can occlude his airway with his chin.  The blue cage is a protective device for his trach.  Apparently in her panick, she forgot.  Can you understand WHY I was hesitant to leave?  There was the experience with her in the ER when Ben was sick.  I had been holding him the whole time while waiting to be seen.  At one point I left to go to the bathroom and when I came back she explained to me that she had "covered him in white light" to keep away the evil spirits.  Um, okay.  Then there was the time that he rolled off her lap onto the floor with a big THUD.  While she worked for me, there were days when we had to go to Dartmouth for scheduled appointments.  She would usually accompany me on the long drives if she was scheduled to work on those particular days.  I remember one of the drives to Dartmouth completely FLOORED me because as we were driving she pointed out to me a spot where her family was actually abducted by aliens.  Yep.  No lie.  She was as serious as could be.  And she was taking care of MY child?  THAT my friends is when I decided I was done with nursing.  The long, painful 6 months came to a close after that experience.  And we've lived happily ever after since.  The end. 

SHARING IS CARING

(so I'm sharing THIS with YOU...you're welcome)

LOVE post-hospital stays.  Antibiotic induced diarrhea...on a DAILY basis.  An (almost) 8 year old sized kid makes this a 3 man job, except everyone goes running when I sound the alarm.  Can't say I blame them.  Oozing fecal matter scares me too.  Wondering if Mike Rowe would come do THIS dirty job. ;)

COMING HOME...

I have a confession to make.  My least favorite part of any hospital stay is the coming home part.  Sounds silly, I know because I do love to be home.  BUT...it's mentally, physically and emotionally exhausting getting to that point.  I don't talk about it much...probably because I'm not very graceful at the whole process.  Let me explain.  When Ben goes into the hospital, I go into survival/adrenaline mode.  Most of the time I don't let myself process what's going on because it's just too stressful.  I swallow any emotions, otherwise I'd be a constant, teary mess.  Add in lots of sleepless nights, making daily attempts at trying to balance both hospital and home life, advocating for Ben as needed and basically just trying to live from one minute to the next.  (nevermind the fact that my enviroment IS the Intensive Care Unit...that in itself is stressful enough)  So when it's finally time to go home, all of those emotions and feelings come rushing to the surface like one GIANT wave.  Ben and I arrive home amidst happy/needy children that are so excited to see us.  The door on Ben's van is broken which means that I have to enlist the help of all three children to help me lift Ben in his wheelchair (including his vent, suction machine and urine bag) INTO the house because I'm not strong enough to do it myself.  Then there are bags and bags of our stuff that have to be unloaded into a house that is chaotic and not as clean as I usually have it.  (it's not their fault...it's my ocd for cleanliness)  Basically what I'm trying to help you picture is that life continues on whether I want it to or not.  I have to jump in full force or get left behind.  Because my two oldest had ball games today, I chose to jump in.  We went to the games and I even was recruited to score the books.  It was a good distraction.  Had anyone asked me how I was doing...I might have melted into a puddle on the spot.  I'm home again.  My children are fed, the dishes are done.  My house still has a ways to go, but that can wait until tomorrow.  I'm thankful for forgiving children that know I need a slow transition back into home life.  As I was leaving the games with Kayla...we were joking in the parking lot, even had a foot race to the van.  When we got inside the van she looked at me and said..."Welcome back Mom, I sure have missed you."  And then the tears came.  It sure is good to be home. 

MOHAWKS AND MAREE

Stevie MAREE that is.

Things are always better when SHE is here.

 A new 'do' and visit from sister.
Life is good.

NO CHANGE

Today was a more stable day for me...and Ben.  Stability is good.  Ben's lung has not really changed from yesterday.  My positively optomistic NP, Marcy, thought it looked "a smidge" better.  I'll take it.  Ben's getting a serious workout every 4 hours.  They literally tip him onto his head via the bed and use the cough assist on him and then add some recruitment breaths through the vent.  He has excessive amounts of copious secretions.  They are amazed how much they get out of him.  Me?  I kissed his sweet cheeks and headed home to see my older two play in their basketball games.  Tomorrow I coach Stevie in hers.  I live for basketball and it's a nice break from the hospital.  My body is tired.  I'm hoping to refill my lamp while home with my family.  Heaven knows...I'm gonna need it.

I CAN'T HELP...

But MELT when I see his face.
(it was a really, really hard day)

SAD

I woke up this morning and I knew that Ben wasn't going home.  You can see it in his eyes.  They just aren't well.  Last night his vent settings were increased.  This morning he had an x-ray taken that looks worse than when he first got back to Dartmouth.  His oxygen levels have been normal until last night into this morning.  Now he's bouncing between 30 and 40% oxygen.  He just doesn't look like Ben.  Steve came to pick me up.  I needed to come home to see my family.  We got back just in time to pick up Stevie from her bus stop.  She was HAPPY...until she learned that Ben didn't come home.  I scooped her up and took her to the library for some alone time and a new book.  We left from there to pick up Kaleb from his practice and say hello to Kayla before she started her practice.  Kayla comes bounding in the gym, screaming with JOY when she spots me.  She wraps her arms around me, kisses me on my cheek and looks me in the eyes and says: "Ben's home, right?"  She knew by the way I looked back at her that he wasn't.  It killed me to see her melt.  I watched the first 15 minutes of her practice and I was glad I stayed.  She lost it in the middle of one of her drills.  At first I thought she got hurt.  The coach had her cornered and she was sobbing.  I ran over only to find out that she wasn't hurt on the outside, just hurting on the inside.  More nights worrying about Ben, more time away from me.  It's hard.  Sometimes she just doesn't want to do it anymore...and I can't blame her.  She didn't want to finish practice so I packed her up and took her home.   

FEELING IT...

Seeing Ben unwell for days...sometimes weeks eventually takes it's toll on me.  Today's been one of those days.