Scuba Diver Ben!

HAPPY HALLOWEEN!

PICU Day 31

Ben's limo arrives at noon.

Ready or not...here we GO!

PICU Day 30

Today was the anticipated day of departure...but true to form, Ben decided that he wasn't leaving. (I'm thinking it's the cute nurses) His little apnea (tantrums) spells yesterday bought him another night in the PICU. What's one more, right? I've seen the trees turn colors and lose their leaves in the amount of time that we've been here. I've watched the helium balloons that were delivered to our room in the first days here slowly deflate. I've seen nurses go on vacations and come back...only to find that we are still here. It's been a long stay and it's time to go home. Tomorrow the DHART (transport) team will take Ben via the big green ambulance. There is a whole CREW coming to my house. It's a little overwhelming. But atleast we'll be home.

PICU Day 29

6 years ago - WOW! 6 years ago Ben was trached. This picture was taken right after he came back from his surgery. (cute as a button!) I remember this day SO clearly. It was a hard time. I was NOT mentally prepared for a trach. See that fresh scar on his belly? That was from his stomach wrap less than a month before his trach surgery. THAT surgery is what caused Ben to need his trach. I learned a very hard lesson in that medically when you fix one thing...inevitably something else will break. BUT, on a happier note, I haven't regretted the trach ever since. It's been our very needed friend.

So today was a little disheartening. Ben stopped breathing 3 different times. It wasn't as scary as it could have been because he is on the vent. The good thing is that the vent will kick in a backup rate if the patient isn't breathing for a specific amount of time. (his apnea alarm is set at 30 seconds) The disturbing part for me is that he was wide awake. He's had apnea before, (rarely) but usually when sleeping. We are trying to figure this all out before we head home...they even talked about keeping him one more night. We'll see how things look in the morning.

PICU Day 27 and 28

Ah...Ah...Ah...

...CHOO!
Bless you!

48 hours and counting until lift off.... :)

PICU Day 26

It's a sad day when the record for longest PICU stay is broken. It's certainly not something we set out intending to do. 26 days is our longest stay ever. I know it pales in comparison to some children who spend months in the PICU...but it still feels LONG. Ben had more crazy eye movements today. They gave him a loading dose of phenobarb again and upped his normal doses of phenobarb and kepra. Hopefully that will keep them at bay. The other exciting or not so exciting news (depending on how you look at it) is that they are taking out his PIC line in the morning.

PICU Day 25

I'm taking big brother home today.
I'll be back tomorrow.
Discharge date is set for Thursday.

Hoorah!

PICU Day 23 and 24

Today Ben's home vent came.
I've spent some of the day training.
They are still giving him trach trials.

They want to see how he'll do off the vent.
(for short periods of time)
My plan at home is to take him places without it.
And when we're home, I'll put him back on.
Life will be less complicated that way.
And hopefully soon he'll be off it all together.

On a happier note,
Kaleb is visiting this weekend.
Brothers NEED to be together.

PICU Day 22

A BIG thank you to our PICU family for making my birthday GREAT! Cake, birthday song and treats! We are so lucky to have such wonderful, caring people as our friends. THANK YOU! We have collectively decided (with much reservation) to take Ben home on his vent. He's not weaning succesfully. This has weighed very heavily on my heart and was NOT an easy decision. But...we need to be home. I still have my hopes that he will eventually come off, but either way this is what we feel is best at this time.

PICU Day 19,20 and 21

Yesterday Ben came off the vent for a little while and ended up collapsing his left lung again. (sigh) There are many decisions to make as to how we are going to get Ben home. It may or may not involve the vent. If you look at Ben's right arm in the picture, you'll notice some drawings. He has cellulitis. We drew on his arm to make sure it wasn't spreading. They started him on IV vancomyocin. It looks much better after three days. I'm going home tonight to celebrate my birthday with my husband and kids, so I'll update more again tomorrow.

PICU Day 18

I LOVE YOU MOUSE!

Story time with Stevie.
It's his favorite time of day.
This book was given to Ben
by his sweet friend Riley.
(thank you!)

I love you Benny!

PICU Day 17

Notice anything different?

Hello beautiful WRINKLES!
I cut Ben's hair tonight.
He's been FLUFFED and BUFFED.
(and boy does he smell GOOD!)
*****
More detailed updates tomorrow...

PICU Day 16

Calling Nurse Stevie...STAT!

She's HERE! :)
I had to call in the big guns.
Yesterday Ben's left lung went down.
Nothing like a little Stevie
to help "inflate" what's "down"!
(and I'm not just talking about lungs)

(Ben getting some chest therapy)

PICU day 14 and 15

Views from both windows in Ben's (large and spacious) room.
We've passed the two week mark. UGH. I am tired...no, more like exhausted. The first week in the hospital, your body runs on adrenaline. It's a wierd kind of energy. SOoooo not normal. Your mind and body sort of switches over to auto-pilot, pushing aside the emotional. You tell yourself, "I've done this (many times) before, I know how this works." After the first week comes and goes, you let down your guard, you start realizing that you might be here for awhile. It becomes tiring...in all sorts of ways. It is Phsyically, emotionally, and mentally draining. Back and forth, back and forth. More sitting, more waiting, more time in the PICU. It's a mind game. Now we are into week three. The dark circles under my eyes are manifesting themselves. I've been able to keep them at bay...until now. I'm anxious. Anxious to have my child be healthy again. Anxious to go home, to have my family be ALL together again. Just a few more days I keep telling myself...just a few more days.
*****
He's almost done with his Pressure Support.

Getting him off his Peep is next.
Stay tuned...

PICU Day 13

Today the PICU Team decided to take away his pressure support and leave him just on his peep for as long as he'll tolerate it. Hopefully he'll wean a little better going this route. He'll go back on his pressure support with the peep overnight and hopefully be on just the peep all day and over night. Once he does that, they'll wean him off the vent. It's a slow process, sometimes painfully slow. They have started him back on his percussion vest to help move the junk up and out of his lungs. This picture is of Ben after his 20 minute treatment and bath. He's WIPED!

Cute boy. :)

PICU Day 12

Ben had a pretty hard night.

He didn't recover too well from his trach trials.

He had a low-grade fever too.
As a result, his settings were increased on the vent.
No trach trials today.
They are letting him rest.
Looks like Monday's departure date will not happen.

PICU Day 10 and 11

I went home overnight.

Now Ben's giving me the cold shoulder.
(not really)

He's just tired.
They have been working him HARD.

Yesterday they took him off the vent for 4 hours.
That's all he could handle.
Today he went 9 hours.
He's beat!
It's hard work breathing ALL by yourself.

Tomorrow we'll stretch him longer,

which means that we could possibly head home Monday.
Hooray for progress!!!

PICU Day 9

Check out these cute pictures of Ben and his furry friend.

He's giving him THE EYE!
It makes me laugh...

He LOVES his cute bedmate.

(silly boy)NO changes were made on his vent settings.
Tomorrow they'll take his PS away,
Sunday trach collar,
Monday HOME!
(that's the plan and I'm sticking to it)