Resting

Today Ben slept.  ALL DAY.  Probably because he was awake all night.  Dr. Filiano took away his sleeping medication because his heart stopped for 8 seconds a couple of nights ago.  They aren't sure why, but clonidine can slow the heart down and so they felt it was best to take him off.  I agreed although this med has been such a life changer the last 3 years in the fact that Ben would sleep through the whole night.  Before he would go days without sleep, which meant Steve and I did too.  I can handle anything as long as I can sleep.  Dr. Filiano is hoping to try another medication on him tomorrow if he has another sleepless night.  Silly Ben.  Another antibiotic was added due to a positive blood culture.  He's stable from a respiratory stand point and there have been no fevers today.

FROM MGH TO DHMC

We made it back.  It was an adventure.  Snow squall, crew change in Manchester, car sickness, apnea and heart issues.  HOW?  I keep asking myself.  How do I end up in these situations?  How many other chronically ill children PICU hop the way that we do?  It's CRAZY!!!  It's exhausting and stressful.  But I'm always happy to land back on our home turf.  Ben has been lethargic for 24 hours now.  Not typically like him.  Ever since he spiked his fever last night he's been dead to the world. 

Picture above is at Mass General in Boston....

the last time he was awake.

Below is Ben at his home away from home.

Dartmouth's PICU.

Still asleep.

He's tucked in for the night. 

We'll see what tomorrow brings.

I'm plum tuckered out.

See you in the morning.

Oh Benny...

Thank goodness for Ben or my life might be slightly dull. :)  We're back in the hospital.  Not our usual hospital, the beds were full...so we were shipped to our second favorite place.  Mass General Hospital in Boston.  We love their PICU and the people that work there.  We've been once before and had a great experience.  Four years and a new PICU later, we're back and I have no regrets being sent here.  The only downside is the distance from home.  It's hard to be so far away from my family.  Because the transport was in the middle of the night, I opted to ride down in the ambulance with Ben which means that I am car-less in Boston.  Dartmouth transported us in their brand new, posh truck.  The seats?  PLUSH.  We made it to MGH around 3am.  They tucked us in pretty quickly and I was in bed by 4:30am.  Didn't sleep much that first morning because they spent most of it trying to get an IV into Ben.  The one from the ER blew on the way down.  The DHART team attempted a few IO's but were unsuccessful.  By 6am they had an IV running and antibiotics on board.  His x-ray showed a left lower lobe pneumonia...surprise?  He had a 103 fever, high white blood cell count and was needing a LOT of oxyen.  Not typical for Ben.  We've been here a couple days now and he looks much better.  They still have IV fluids running, he's on 40% oxygen with a pressure support of 14 and peep of 7 on the vent.  Last night, just as I had fallen asleep, Ben had an episode of prolonged apnea.  The dr.'s still aren't sure why this happened, but it made for one big party in his room at 1am.  Still running on nearly empty as far as sleep...and there is talk of a transfer possibly in the next few days if all goes well and Dartmouth has an open bed.  Otherwise, things are heading in the right direction.

BEN'S CORNER

Sorry about this dark-ish picture...my flash isn't working on my camera.  I finally have a corner in our family room set up for Ben.  I'm excited because we have a chair that the bean bag fits nicely into so that I don't have to bend over so much.  The vent is tucked away behind the chair and his suction and pulse oximeter are close by.  I feel so lucky that Ben has TWO vents available to him.  I might not be as diligent in using just the one if I had to constantly move it up and down with him.  Steve and I decided that we will be leaving Ben home from church starting tomorrow, atleast until this winter passes.  Thankfully I have a few close friends that will take turns with us in staying home with him so Steve and I don't have to miss every Sunday.  We are fortunate to have such good people in our lives.

Lately...

It's becoming more and more apparent that Ben is requiring his vent on a regular basis.  I'm not really thrilled with this realization.  Although I am grateful that we have avoided hospital time thanks to the vent.  I don't vent him ALL the time, but if he's off of it for too long a period, it really does a number on his left lung.  Yesterday I took him off the vent around 3pm.  We put him back on the vent around 9pm and before hooking him up, we checked his saturation.  It was 73%.  That seems to be a regular tred as of late.  This is a child that has never had issues with his oxygen levels unless he is sick.  The good news is that the vent 'pops' that side back open when we put him back on.  The bad news is that this is a progression in the wrong direction.  It's a visual slide backwards...and it scares me. 

LIKE CHOCOLATE AND PEANUT BUTTER...

We BELONG together.

Thank Goodness

For days that allow us to be home and resting.

Ben's New Year Resolution...

To lose a little around the middle.
(Someone needs to stop sneaking him donuts)

HAPPY NEW YEAR