BECKY AND BEN

Homemade Photo Booth shots.

(cuz they're fun)

PNEUMONIA

Ben saw his pulmonologist Friday and she sent him for an x-ray.  She called me Saturday to tell me that she was suspicious about how it looked, but wanted the official reading from the radiologist that wouldn't be available until Monday.  She called me today to tell me that the official reading says pneumonia.  She was questioning whether or not it was collapse vs. pneumonia, but the radiologist seems to think it looks more like pneumonia.  (sigh)  Makes sense because he still doesn't seem quite himself.  She's starting him on a couple antibiotics but it worries me that if it isn't sensitive to the bug that's growing down there it could get worse.  The only way to know is to culture him.  Tomorrow the VNA is coming to draw blood so I'll send a culture with her back to the lab.  In the meantime, she wants me to do vest therapy, cough assist, and nebs...3-4 times a day.  Almost makes me wish I had a nurse...ok, not really. ;)

BEN'S GOT MAIL!

LOOK what came in the mail today!  A package from one of Ben's best friends, Junior.  It made us SMILE. :)  We love that boy.  He sent us one of his very own paintings, some baby legs and this awesome foot warmer with bugs on it - totally made for a boy!  We love everything...thanks for making our day!

POST-HOSPITAL

Things have been pretty good since we've been back home.  Ben's sleep meds seem to be working a little better and he's finished his antibiotics.  The only discouraging part is that at the hospital his vent settings were 8 and 12.  The night he came home I had to up them to 8 and 14.  By the weekend he was up to 9 and 16, the highest he got when he was in the hospital.  I'm not sure why he is requiring such high vent settings.  I know he isn't sick.  I worry about his little left lung.  It's tired and weak.  We see the pulmonologist on Friday, so hopefully we'll have some answers.  In the meantime, I'm crossing my fingers that he doesn't catch this nasty headcold that I've got.  I always worry about RSV...which manifests as a cold.  I hear it's reared it's ugly head locally.  I'm not sure Ben's lung could handle that right now.  I noticed tonight that he continues to have a white coating on his tongue that I just can't clean.  It's taken me a few days to realize that DUH!  It's probably yeast.  (thrush)  Heavy duty antibiotics will do that to your system.  I'll call tomorrow for some medicine...I imagine that it's really uncomfortable.  Then there is the post-antibiotic diarrhea that is reaking havoc on a daily basis.  I'm not complaining.  With gloves I can conquer anything.  It's his poor little bum that makes me sad.  It's red and sore.  I can sympathize.  I know what that feels like from past stomach bugs.  SO...even though he is mostly over his sickness, he continues to battle with post-illness issues.  But we remedy those small battles with lots of hugs and smootches.  It's the perfect medicine for a perfect little boy.

ER and MASS GENERAL PICU (recap)

Here are some more pictures from the ER and Mass General part of our stay.  This first picture is after Ben received a dose of Vancomycin.  You can't really tell, but his face turned all red from getting it too fast.

Here is the phlebotomist getting blood on the first try.  It was a miracle.

Ben spiked another fever while waiting for transport to Boston.

The DHART crew picked us up and drove Ben to Boston.

Unloading him...

It was a COLD night...3am arrival.

Ben's IV from the ER blew on the way down, so this is the ONLY place they could find a vein.

Here are the four IO attempts en route to Boston.

Sick Ben

More fevers

Because IV's never last, a PICC line was put in the next morning.

It went in on the first try.

Ben's vent

A different angle of his PICU room.

(you can see my bed in the background)

Another angle of his room.

ER and Mass General stay January 25-28th.

EKG's, Naps and Wrinkles

Today we are going home.
It's been 17 long days.
His x-ray looks much better.
He finishes his last IV antibiotic dose today,

so no PICC line at home.
One less thing to worry about.

His vent settings are higher,

which will hopefully help keep that left side open.
He has one week left of his oral antibiotic

and then we can put this stay behind us.

I'm looking forward to having him home

and hopefully stay well through the rest of this winter.

Thanks again for all of your love, prayers and support.

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.