I love to take pictures of Bella when she is feeling well….

Bella is FINALLY over the flu.  The docs said it would be about 6 weeks before her lungs recovered.  And they were right.  We are doing 1 hour off twice a day – and she is LOVING it!!  We try to optimize her off vent time.  On Wednesday she started having some green secretions so she is back on antibiotics – here’s hoping that doesn’t become anything.  We are loving having her off and to ourselves!

More time off the vent means more time to play with my family!

 

Playing the piano with Miss Earsel

 

 

I’m delighted by what this picture represents!  She finally thinks it’s OK to put things to her mouth!  You should have heard the choirs singing!! We are thrilled!

 

Bella loves to lick glasses – the cold condensation off the side – and then she wants to put her mouth on the rim of the glass.  She doesn’t know what she’s supposed to do with the glass, but she sees us do it, so she has to try.  :)

 

Dentist

Bella went to the dentist for the first time.  We learned that g-tube feed kids don’t get cavities, but they get terrible tarter build up.  I showed him her yellow teeth.  He took his dental tool and scrapped the tarter away.  Viola – beautiful white teeth again.  Wow!  Her primary had said that they were yellow from all the meds.  Another reason it’s a good idea to go to the specialists!  :)  She was delighted with her free toothbrush.  She held it all the way home.  :)

This was the same dentist that cancelled our appointment three months ago because we were late.  I am glad for those three months!  In that time we have had time to overcome her oral aversion more.  I can’t imagine this trip three months ago!  

She looked adorable in that huge dentist chair!  :)

I wonder….

When my 14 year old got out of the shower tonight, she told me that sometimes she wonders how long Bella will live.  The very next moment she added, “But there’s Sarah and she’s 21.”  And then I was grateful.  Grateful for the internet.  Grateful for blogs.  Grateful for people that open up their lives and hearts for all of us to see.  Grateful that we aren’t walking this road alone.  Thank you.

 

In Bella world, things are good.  She is up to  HME trials of 30 minutes twice a day – yeah!!!  We are trying a new regiment of diuretics.  We are switching formulas to something with probiotics that will hopefully help with our GI symptoms of late.  And I double checked, it’s lactose and gluten free.  I’m pretty paranoid about that.  Last visit they tried to add something with both milk and wheat  - nope says Mama.  Oh yeah, says the doc.  :)  Oh well, at least we all have the same goal – a healthy, happy Bella.

Guess who we got to meet?

Joy and Bella from earlier in the week.

On Wednesday, after our doctor’s appointment, we got news that two of our girls were stuck in Utah.  They had been visiting a friend.  They flew out on standby.  They had looked at the schedule and it didn’t look good for getting them home before Monday when school started.  So Jason and I made the rash decision to drive up there and get them.  We drove all night and the whole of the next day to arrive at 11:30 PM.  We crashed for a couple of hours.  We needed to turn right around and get back, but we were so close to my friend Lacey’s house.  I just had to see them!  That morning we drove across the valley and meet Jaxson!!!  They seem like such wonderful people on their blog, but blogs can be deceiving- they only show what you want people to see.  I have to tell you the Ruggs are a wonderful family.  They are the real deal.   They welcomed us and let us interrupt their morning to meet sweet Jax – and on Tanner’s birthday too!  I LOVED meeting Lacey, Jaxson, Ray, Mondo, Tanner, and Carter.  Makayla is one lucky little girl!

   

Thanks Ruggs!!  Thanks Jax for the smiles and the kisses!

What about Bella during that time?  I wanted to take her with us.  I had never left her before.  But I kept seeing problems.  I didn’t have enough oxygen on hand.  Her med prep alone would have taken hours.  So in the end we left her at home with her nurses and her normal environment.  She did great!  Her nurses sent me pictures and texts.  She satted beautifully.  She was an angel.  I was so nervous.  I have never left her before, but she did great.  I am so grateful!

We need a new plan

Well, the reason everyone was freaking out yesterday was Bella was in impending kidney failure again for the second time in two months.  So the pulm and the cardiologist and the GI doc are supposed to talk and come up with a new plan.  We saw the dietician again to make sure we are getting enough fluid.  We’ll see what they come up with.    Sweet thing smiles and plays through it all.

Can we blame it on the heat?

We get a couple of labs done and the phone starts ringing off the hook!

GI wants this.  Pulm wants that.  Of course we have new nurses here that don’t know Bella.  But it does give me the opportunity to say, “See what I mean.  You can’t go from what the patient looks like (the clinical picture) with Bella.  She looks good.”  My sweet girl today:

We have one more trick up our sleeves to avoid IVs.  We are headed downtown tomorrow.  I’m so hoping things settle down.

Houston is not kind to Bella

Here in Houston it is a million degrees outside.  The humidity is at least 600% and the ozone levels are through the roof.  These are not optimal conditions for a little one with delicate lungs.  We handle this by never leaving or going outside – ever.  Period.  Except this week.  We had to go gets labs, twice.  Yuck!  Poor thing was stuck and stuck and stuck on Wednesday.  They were unsuccessful and couldn’t get any blood – nothing.  My poor baby was sobbing.  My heart was breaking.  It was just bad.  I called pulmonology and they said we have to have those labs.  Ugh.  By the time we got home (we were out less than an hour) her eyes were red and leaking this lovely thick yellow green stuff and she was coughing.  And wheezing, well that just about doesn’t stop these days.  O2 needs are up.  Thursday the doctor started Gent.  Friday we went back and they refused to try anything but a heel stick.  They squeezed three bullets worth of blood out of her foot.  We got our labs, but again by the time we got home she was paying for being out.  Saturday the hospital called (never good when they call on the weekend).  They didn’t like her glucose of 25 – we need to redo it on Monday.  Ugh.  Anyone know of a wonderful place to live for little ones like Bell?

Oh – and we have Failure to Thrive back on our list of diagnosis.  You gotta grow babe!  GI upped her feed rate again.  She spit up once, but otherwise is tolerating this new amount.

Through it all, she wants to be held more, but she smiles and loves.  Oh Bella – you are amazing!  I hope one day to endure my trials as well as you do.

Our Cute Girl

Our power periodically goes out.  If it stays out for more than one hour, I call Jason and he comes home and starts the generator.  I just don’t have the upper body strengthen to do it.  I am so grateful we have the generator.  The vent has a couple of batteries, but none of her other equipment does, so the generator makes me feel much safer.

Valerie’s official last day – Red Velvet Cake.  We miss you Valerie!

Hangin’ with the family

   

We went to see GI yesterday.  She is willing to take a baby step and we are going to start giving her one med in her G tube (rather than J) once a day.  In three months, if she is tolerating that, then we’ll take another baby step.

My Happy Girl

We love the rocking chair in Bella’s room.  With her kick board attached to the front, it is a safe padded place to practice sitting up!  :)  And she loves it.  She has learned that if she throws herself backwards, she can rock!  :)  Yeah Bella!  I’ve talked about it before, but thought a video would be fun.

More beautiful pictures of our girl.  We just can’t get off the vent.  It’s just taking a while to build up her strength.  She has had some random fevers at night lately, but for the most part seems to be on the slow road to recovery.

Nursing – we had five nurses and everything was happy.  Life followed a nice routine – and then in a matter of a few days, I lost three of my nurses and one went on a two week vacation.  Ugh!  So we are going through several orientees and lots of new faces.  Sweet Bella isn’t a big fan.  New people aren’t always safe to our sweet girl.  I am so hoping that we can find good people to help care for our girl.  People that will love her.