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.

BRONCHOSCOPY

Today was Ben's repeat Bronch. It went well. His left lung looks just a little bit better than last time - nothing to shout about. The doctor wants us to continue his neb treatments, she thinks they are working. Ben was sent to the PACU after his procedure to wake up from his anesthesia. He took THREE hours to finally wake up. AND he made everyone nervous (except me) with his heart rate of 35. They had atropine bedside "just in case".

Anesthesia induced sleep

post-anesthesia sleep

OH...and I guess there was some confusion as to whether or not we were still in the PICU. SORRY! We came home late Monday night. We've been home since then. Thanks for your worries and concern. His lung is UP and we are HOME. :)

Ben's Birthday Present

This year for Ben's birthday we decided to get him an ULTRASAC. (actually the school paid for it...but it was my idea. It falls under specialized seating guidelines) It came today. It's LARGE and so COMFY. He pretty much outgrew his other bean bag so we went for the 6 footer this time...that's as big as they come. I'm thinking this one will suit him just fine for a long time. Happy (late) Birthday present Ben!!!

HAND IN HAND

THAT DARN LUNG

Ben is back in the PICU. His left lung is down again. Somehow I feel as if I'm living the movie "Groundhog" in real life. Weren't we just here? Or maybe we never left? I'm not quite sure anymore...

More adjustments are being made. More brains are being scratched.

YESTERDAY...

Ben had the full spa treatment,

a nap with him mom

and more birthday surprises.

Today he had his bronchoscopy.

It went really well and was fascinating to watch.

There was no malacia, his anatomy looked normal.

The right side looked beautiful, no surprise there.

The LEFT?
It was a mucousy mess. The mucus was SO thick, it was plugging the scope. They had to continuously take it out and flush it with saline. They want him on albuterol/mucus mist twice a day for a week. He'll get his vest treatment during the neb and then cough assist right after. Then in a week he'll have another bronchoscopy to see if there was a difference made. We're hoping that this might help keep his left side open and cut back on PICU stays. Tomorrow we have permission for discharge. :)

STEVIE'S BIRTHDAY GIFT...

8TH BIRTHDAY PARTY

  

IT'S MY PARTY...

And I'll CRY if I want to.

Happy Birthday Sweet Benjamin.
Party Post Coming Soon...

BACK IN THE SADDLE...er PICU

I kind of had a gut feeling we were headed back.  His poor little lung.  It's completely collapsed again.  Somewhat discouraging.  I was really thinking that he'd be home for his birthday after the last stay.  I figured that would be it for awhile.  This poor child isn't even through with his antibiotic regimen from the last PICU stay and we're already back.  (sigh)  

The first picture is shortly after arriving in the ER.  

DHART getting ready to transport him up to the PICU.

Dr. Meredith examining Ben upon arrival.

 Ben after I tucked him in and kissed him goodnight.

HIGH PRESSURE

Here are some recent pictures of Ben.  We were snuggling together on my bed.  I can't do this for very long anymore because sadly he needs the vent.  The more and more time passes the less and less he tolerates being off the vent.  Just this morning I took him off so that I could bring him downstairs for the day and he immediately dropped his saturations.  It was sobering.  Lately his vent has been 'high alarming'.  His PIPS are high.  His secretions are more copious and yellow.  I'm fearing another collapse.  He's still has a few more days of IV antibiotics and his oral one too.  I will be so sad if he becomes sick OVER his antibiotics.  His birthday is Sunday.  He's turning 8.  He's known for skipping out on his own party.  Ben's what we kindly refer to as a party pooper.  I'm much appreciate it if you could keep him in your prayers this weekend.  Thank you!!!

We love you guys.