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

Saturday, August 1, 2009

It was the best of times, it was the worst of times…..

Bella continues to battle little bugs.  She has not had full strength formula for longer than 24 hours in the past 2 weeks.  Thank goodness for Pedialyte.  I think we should buy some stock in the company.

Bella’s g-button came out twice this past week.  The first time was on Tuesday.  We had to have a contrast study to make sure we had correct placement and had to see pediatric surgery.  It’s always such an adventure to go downtown and see 5 doctors with an EMT, Paramedic, and RN.  I am grateful for them though.   She was vomiting and developed a fever.  So now she is on antibiotics.  The track for the g-button takes about 6 months to totally heal.  The second time (Friday) it came out, we just stuck it back in.  This time we replaced the whole thing.  They figured out the balloon that holds the g-button in place was leaking, so it wasn’t holding everything together the way it was supposed to.  We also learned from her contrast study that she is refluxing like crazy.  UGH!  Poor thing.  She lives in a 30% – 45 % angle all the time.

She spiked a fever on Thursday night and has been requiring some oxygen supplementation occasionally at night.  She was just miserable all Thursday.  She didn’t want to be held or look at anyone.  Just leave me alone and let me sleep!

That’s the bad, now for the good. 

The pulmonologist felt that her 1 hour collar trials were going so well, she could move on to 2 hours on an HME three times a day!  Wow – that is huge!  What is an HME?  When you and I breathe, the air comes through our nostrils.  The air is filtered and warmed there before proceeding down to the lungs.  The HME acts like a nose.

image

This picture is from http://www.tracheostomy.com.  It shows a cute little guy wearing an HME over his trach.

 

I can’t believe she has gotten to this point so quickly!  Way to go my strong little fighter!  When she is off the vent, she is able to cough more easily and get out more secretions.  We watch her like a hawk and suction a million times.  We have decided to work up to our goal of 2 hours 3 times a day.  So we are starting at 1 hour 3 times a day – as long as she can tolerate it.  She has been sick and weak, so it hasn’t happened yet.  But we are working on it.  She is progressing.  I can’t ask for anything more.  Despite being sick, she just keeps moving on.  What a wonder you are little Bella!

Bella in her swing and sitting up in bed.  She loves to sit up.  We can’t wait for her chair to come!!

aug 1 005 aug 1 017

Daddy holding a happy Bella (she was feeling well at the moment).  The way I like to see the vent – OFF!  :)

aug 1 022 aug 1 023

6 comments:

Lacey said...

Way to go Bella. I bet having air forced down your lungs with the vent is not helping the tummy issues. I remember Jax used to get tummy issues on the vent. Her nissen is probably not intack anymore because of that stomach surgery huh? Oh sweet Bella. I need a pic of her for my frame. A close up of her cute face if you have one. Email it to me.

ABandCsMom said...

Good job Bella. What a little trooper you are. Such a precious little doll.

Cammie Heflin said...

She looks great! I'm so sorry that she is fighting bugs, poor little thing! Her hair is amazing! I love her little face, you keep on fighting Bella!

Junior said...

GO Bella, great job. Hope you are feeling better quick

Heather said...

Up and down,a variable roller coaster .. hate those darn rides.She may have some bumps but she sure handles them really well.Is the sizing right with the mickey?It really shouldn't come out unless it is an integrity thing with the balloon.Had to be a pretty good leak.Do you change it our yourself?I always test check the balloon prior to inserting it.And .. she looks so chunky and so good despite the bumps.Prayers continue.

Lacey said...

I just got an email from Libby's mom. She now has a fever so they canceled a cath for this week. They had her on 15 liters facemask. I'm like, why don't you give the girl c-pap to help her a little.