Please Join Our Family...

In honoring Benjamin's Life

June 11th at 11am

Held at:
The Church of Jesus Christ of Latter-day Saints
Old North Main Street in Laconia, NH

Please wear bright colors

MISSING YOU...

with EVERY fiber of our being.

LOVE YOU BENNY

 April 4, 2002 - May 29, 2010

PAINTED TOES

Goodness...I left for a few minutes to drop my two older kids off at a church activity tonight and came home to THIS:

(cute, painted toes...)

She's a sneaky one...that Stevie Maree.

(look closely, Ben's rolling his eyes)

Ultrasounds, X-Rays and Bloodwork...Oh My!

DISCLAIMER:

First picture is a little graphic.

(you've been warned)

This is Ben's diaper last week.  It contains blood (mostly dried) and green drainage from his foley site.  It was a LOT alarming to find.  I took a picture to send to the doctor since we are 90 minutes away and it's not convenient to jump in the car and drive up there.  He ordered a kidney and bladder ultrasound for today to make sure Ben doesn't have any bladder stones and to make sure the kidneys are functioning okay.

I snuck a picture in during his kidney ultrasound.  It was LONG and BORING because there was a resident radiologist in training and Ben is a difficult kid to scan because his kidneys are tucked up high behind his ribcage.  

Below is Ben with all the goop on his side...they kept changing the ultrasound probe from adult to pediatric and back again because they were having a hard time getting a good picture.  Good thing he is so patient.

We spent a total of 9 hours on the road today.  WHEW!  Long day.  His x-ray did not look so good.  His left lung is showing collapse.  I think his pulmonologist is going to be mad at me when she calls tomorrow with the results. (my PICU peeps gave me a sneak peek today)  His PCP ordered some blood work to see if we can find the reason for his swelling.  All looks normal.  I'm happy but frustrated.  I can't figure it out.  Don't know if we ever will.  The urologist says his bladder and kidneys look okay, not great, but not bad either.  He's not sure why he's been having problems lately but wants us to continue what we are doing and he will be seeing us more frequently to monitor things.

This is what Ben looks like tonight.  He still has a few bandages left that I need to take off from his blood work..  It's 85 degrees today so I stripped off his jeans to cool him down.  I'm sure he is wiped because half way home the vent battery died.  I wasn't anticipating being gone that long.  45 minutes he had no support.  His sats stayed up but I know it wasn't helping that poor lung of his.  He always gets tired when he's off the vent because he has to work much harder.  I've been taking him off for short periods of time recently but I think I need to stop seeing how his x-ray looked.  It makes me sad.  I was really hoping to start weaning him way down now that he's feeling better.  

SABBATH DAY

We MADE it.  Two Sunday's in a row.  Ben was rockin' his NEW sweater vest from Mimi. :)  She gave it to him for his 8th birthday.  I wondered if he'd ever get to wear it to church.  It felt so great having him there with us today.  AND it was a beautiful sunny day to make it perfect.

Ben's Hands

I'm worried about them.  His fingers are so swollen that you can't see the normal knuckle wrinkles anymore. Look at the size of his thumb.  He's 8 and it's comparable to mine.  You can't pinch skin either. They are like swollen sausages.  Tomorrow he has an appointment with his Urologist and he also has a scheduled ultrasound.  Hopefully they will have some answers although I'm not holding my breath.  Anybody have a guess as to why?  And PLEASE do not tell me his wraps are too tight.  They aren't.  

Yesterday I had Ben off his vent for 6 hours.   I'm sure his pulmonologist would have a fit but I did it anyway. I want him to not be so dependent during the nicer weather so we can get out more.  I feel as if a lot of his increased vent needs were due to still being sick down in his lungs.  They sound really good now.  I might even ask for an x-ray just to make sure I haven't collapsed anything.  If his left lung still looks good, I'll ask his doctor to start weaning some more vent settings.

Today we are off to church.  It's the second week in a row.  Looking forward to many more.

This Nurse has been FIRED!

So last night I gave Ben a cute hair cut followed by a nice bath.  He looked so clean and smelled so fresh.  I kept telling Steve what a professional I was (kind of tongue in cheek) as I dried in between his fingers, powdered them and wrapped them so that they would stay dry.  Then I applied his face creams, cleaned his ears and chapsticked his lips. Things went down hill from there.  At the very end of my near perfect night, I reached in the drawer above his head for the eye drops.  His eyes were awfully red that night.  I twisted the top off and proceeded to drop the thick, gooey drops right into his mouth.  WHAT?!?  Took me a second to realize what I had just done.  I was off in my own world while Ben's tongue was being lubricated.  Good thing they weren't toxic.  Good grief.  I apologized to Ben as I suctioned the drops up as best I could.  Then I put them where they REALLY go...his eyes.  I tuck his blanket snuggly around him and wait for his bolus feed to finish.  (420mls in an hour)  The pump starts beeping.  I walk over and start to change the numbers over because at night he gets 840mls over 10 hours.  I got the 840 number plugged in when he has a huge coughing fit that needed suctioning.  By the time I was done helping him the machine was beeping at me again, this time letting me know that I had forgotten to start it.  What I didn't realize is that I never changed the rate from 600 to 84.  Big mistake.  I started the pump and climbed into bed.  About 30 minutes later he starts coughing...and retching.  I get up to help him.  Now it's constant.  He never retches...unless his belly is too full.  This crosses my mind but I know that's not what it is because his belly isn't over full.  (little did I know)  The next 30 minutes are consumed with constant suctioning...his heart rate is high.  He's stressed, but I figure it's from all the coughing.  That's when the pump goes off AGAIN.  I look over and the pump says "DOSE COMPLETE".  WHAT?!?  I run over and check the numbers.  The bag is nearly empty.  I realize what I have just done.  I fed his poor little belly 840 mls in a little over an hour AFTER he just finished his bolus feed of 420.  That's like eating three complete meals one right after the other.  Thank goodness for g-tubes.  I ran down and got the biggest cup I could find and emptied the contents of his stomach into the cup.  I couldn't just discard it because there were important meds mixed in.  I decided to pour it into another feeding bag and drip that feed in over night.  The rest of his undigested milk could be given to him in the morning.  Crisis averted.  (thankfully)  And then he fired me.

(White milk is the undigested food, yellow is what I emptied from his stomach)

And he slept peacefully ever after.  No worries though.  The nurse that was fired thankfully was re-hired.  

(in the morning, he's forgiving like that)

STATUS QUO

It's been over a month since we've been in the hospital.  Such a great feeling.  To celebrate, I've been slowly weaning some of Ben's vent settings.  So far so good.  His oxygen sats are great, volumes are good and he is doing fantastic!  The systemic yeast problem is getting better slowly.  I think another week and we will be done with it. (hopefully)  A week ago Ben was having some bleeding and green drainage from his cathetar.  I took a picture and sent it in to his urologist.  (you can thank me for not posting it because I almost did)  He wants to see Ben for an ultrasound and follow-up to rule out bladder stones and other issues.

I woke up this morning to a foaming child.  It made me laugh.

PICC LINE GONE

The VNA came and removed his PICC yesterday. There was a debate of whether or not to keep it in any longer but after looking at the site, it was looking sketchy. You don't mess around with lines. Too risky. She pulled it and this is what it looks like 24 hours later. Poor boy. I'm sure it's itchy/painful...something. He just can't tell me. Because he is not symptamatic, they are not treating this as an infection. They do however want me to apply some bacitracin for about a week all over the site. He developed small blisters all around the site that are oozing. The nurse suspects some kind of staph. Aside from a sad looking arm, Ben is doing great. I think we've finally turned a corner and are ready for summer!

GYM RAT for the day....

Saturday was ALL DAY basketball for the girls.

Up at 5am and home at 6pm.

It was a LONG day.

Ben came along as my sidekick.

He made for very good company.

Was very well behaved and kept his eye on the ball.

(even when his mom didn't...THREE times it nearly hit him in the face when I was distracted. Thankfully it missed him all three times.)

This boy has TALENT!

FUNNY!  

(he had a slight leak on the vent)

I love...

...this picture

because I know that Ben loves me 
with all of his heart.

His gaze tells me so. :)