WORKING HARD

Ben getting his "Respiratory Workout".

It's HARD work.

You can see it in his face.

Makes me sad. :(

But I know it's helping.

Because his lung looks a little better today.

All that hard work is paying off.

But he still has a long way to go.

12 days...

THAT is how long we've been here.  My hopes for a short stay faded away after the news of Ben's x-ray on Wednesday.  It was worse than when we arrived.  Thursday it was even WORSE.  Today?  No change really...if anything it's a smidge better.  I left Ben's hospital room around 1pm today, AFTER I had a nap with him.  It felt good to snuggle with him before leaving for home.  Rumor has it that he even got a nice bath and hairwash today.  That always makes me happy when I come back to a freshly bathed boy.  I'm not sure how long we'll be in the PICU.  There is a lot of work to be done to try and inflate his left lung.  He's on pretty high vent settings right now and it hasn't seemed to help.  Dr. Braga mentioned a brochoscopy if things aren't better after the weekend.  They started vancomycin again to see if he improves with antibiotics.  I'll update more tomorrow.

Left Lung Down

We didn't go home.

It was a gut feeling I had.

I knew he wasn't right.

Now I know why.

His x-ray looks WORSE than the first day.

Today looks even WORSE than yesterday.

And that's with MORE support.

Looks like we'll be here awhile.

UP lung...UP!

Sleep...

Two nights in a row it has evaded him.  Then it becomes a battle during the daytime to keep him awake.  It doesn't seem like this new med is working.  So discouraging knowing that we gave up a perfect sleep med...even if it was for good reasons.  I'm mourning it's loss.  Tonight Ben actually fell asleep around 6pm, before he even received his meds.  It will be interesting to see how long he stays asleep tonight.  Tomorrow we are scheduled to leave.  Ben's going home with his PICC line and I'll be giving him his antibiotics for the next 10 days.  Not something I'm foreign to considering I myself have had over 11 PICC's in my lifetime.  He's not even close to coming off the vent yet, I'm suspecting that will take a few more weeks considering his vent settings are higher than at home.  BUT we're going home.  It's a good thing.

ANSWERS

Last night the doctor came in and told us that the bugs he was cultured for are not sensitive to the antibiotics that he has been getting.  That's probably why he continues to get fevers.  They switched him over to his new antibiotic, which is IV form only.  That automatically buys us more time here.  The cultures from his bladder came back showing yeast so they put him on an IV antibiotic for that.  Because he had a positive blood culture he's getting IV Vanco. for that.  His potassium has been on the low side since we've been in and dropped even lower over night.  They gave him a dose of potassium through his g-tube this morning.  They haven't figured out the reason for the drop as this is not his norm.  He was started on a new sleep med last night but slept 90 minutes after he initially received his dose.  He was awake through the rest of the night and then promptly fell back asleep as the sun was rising.  I've tried numerous times to wake him but have not been successful.  We'll try it for a few more nights to see if it gets any better.  I'm still waiting for rounds so if there is anything else I've missed I'll update later.

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.