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. :)

TRIP TO MASSACHUSETTS

I took the kids to see their grandparents for a couple of days since it's their school vacation.  We had a blast.  What a lot of work to bring Ben and all of his stuff.  And I had a lot of help.  I was really hoping to bring him to the Microcephaly Conference in June, but think that it's best to leave him home.  Traveling is so exhausting and I think doing it by myself will be too much.  I have always traveled with Ben alone, but never on a vent.  I think I would be doing us both a favor by leaving him home.  BUT...I still may go by myself.  I'll know in a week or two for sure.  You can see that I'm still treating his hands and feet.  I have to keep them powdered (with a nystatin powder) and wrapped,  and I change his gauze often.  If they aren't getting better by Tuesday, they'll treat him systemically with an antibiotic to help get rid of the yeast/fungus.  Otherwise, he's doing great.  

WONDERING....

Wondering if Ben's face looks swollen.  It's hard for me to tell as much because I'm with him all the time.  The visiting nurse was here today to change his PICC dressing and she seems to think that he looks a little bloated.  (his belly looks pretty big too)  Wondering what my friends in cyberspace think?  His hands are still not good.  I'm thinking that it might be a fungal type of problem.  We have a nystatin powder on board now and I am really trying to keep them dry.  It's not easy work.  The good news is that his left lung seems to be doing really well.  I'll take it! :)

BREAKDOWN

Ben has started to have skin issues.  It makes me sad.  Because Ben's hands are fisted all of the time, the skin stays moist and damp.  I usually have him hold onto rolled gauze, but lately the skin in between the fingers on one of his hands started breaking down because of the moisture.  His left foot is having the same issue.  Hopefully wrapping the gauze in and out of his fingers and toes will help.  If not, there is a concoction of barrier creams that I can try next.  Has anyone else dealt with skin issues on the hands and feet before?  If so...any thoughts?

MY FAVORITE PLACE

BEN'S BEANBAG

When all my chores are done, when all of my children have been fed, and when the homework is complete, THIS is where you will find me. Snuggling with whomever wants to be snuggled. It's my favorite place to be.