Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, May 27, 2009

Wonder of Wonders!

This morning has been a flurry of good activity!

Pedi surgery has come and gone.  They removed the drain tube – ouch!  It always amazes me how long those things are.  It is now leaking pus too.  So she has the two open sites there that are just gross.  The drain to keep her tummy decompressed was removed (the one in her nose).  I can see her beautiful face again.

The ultrasound showed no improvement with our collection of fluid, her abscess. There is scar tissue throughout it, so it would be hard to drain (think of a honeycomb).  So they are going to give it two weeks of good antibiotics and see what happens.  They’ll repeat an ultrasound at that time.

They are starting her on Pedialyte at a rate of 5 cc’s an hour.  We’ll see how her tummy handles it, and go from there.  They say the inside of the tummy heals quickly.  I wonder how much of the stomach they had to remove.  I wonder how that will effect her long term.  Will she just eat frequent smaller meals?  We’ll see.

AND…….We have orders to be transferred to the PCU!!!!  Wahoo!Now I can continue learning how to take care of my baby.  I know that the protocol is 2 weeks in PCU and then home.  I also know that we won’t follow that because of this tummy issue – but – we are moving in the right direction!  WAHOO!!

Pulmonology wants to start very slowly, without stressing her at all, weaning a little on her vent support.  When her tummy is resolved, they want to go in and take a peek.  She acts like and is being treated like she has bronchial malasia.  They want to see if she actually does.  The pulmonologist and I talked for a long time about the plan now.  It looks like we are here for another 4 to 6 weeks to really get to know Bella’s lungs and what she’ll need.  Yeah!  A plan.  We have a plan!

So, good steps in the right direction!

On a different note, I have to say thank you to all of those who support us and share your blogs and kid’s stories with us.  We were prepared for the trach/gtube/fundo.  I am watching/listening to a little family across the PICU hall that is being presented with the trach option.  I am so glad we weren’t alone and unprepared.  So, thank you for sharing your lives with us.  It has been such a blessing.

8 comments:

maniamam said...

I'm glad there are steps in the right direction. The wrong direction is dreadful and very time consuming. oh! A tiny little gold finch just flew into my window. The poor thing is dazed and confused but upright! No rescue mission is required at this time. It's not a gold finch.... hmmm I'll look into it and let you know. It's so cute and tiny. Little black eye mask with grey head and back and yellow belly. Ah... it flew away. Sorry for the diversion. I'm so happy there is a plan in place. Now Bella just needs to stick with the plan! Love you guys. Hugs and prayers.

Cammie Heflin said...

Sounds like things are going much better! I was always relieved when something was removed from Addy too!

Mia hat eins mehr! said...

now that sounds good! Step by step, heading home! To have a plan is the most important thing to hang on....good luck with that, still thinking of you and praying for you always. The little trooper she is, the strong persons you both are!

Love
Claudia

Kathie said...

yeah for Bella! I am glad that things are moving in a upward direction - the direction of HOME! Glad that you have a plan and know how much plans mean to you - just get Bella to sign off and away you go! :) Love ya.

Lacey said...

A plan is always great, even if it means a few more weeks. Why can't they teach you anything in the PICU about trach care? That seems wierd. I'm so glad you get to get out of that depressing place. A long time in PICU can really dampen spirits.

My name is Sarah said...

Blessed be a plan. So glad to hear about all the improvements today. Great news!!

ParkerMama said...

Any questions about trach care..just ask! I'm an expert. :D

I promise that by next week you'll be a pro too!

Hugs!

Heather said...

"If we are facing in the right direction,all we have to do is keep on walking."~Buddhist saying

Keep it up sweet Bella.Can't say it enough ... Slow and Steady.