Crazy Times

In so many ways Bella is doing fabulously!  She is having her short periods off the vent, so we are able to try new things.  Her OT has been dying to get her into the swing.  We were able to on Tuesday – and she LOVED it!  I had been promising her for over a year that if she would get off the vent, I would get her a baby sling so I could carry her around with me.  She liked that too.  (YEAH for all the good!!!  Yeah, Yeah and Double Yeah!)

But she can’t seem to get her labs figured out.  Monday labs again, Tuesday the frantic call from the doc again, Wednesday more labs.  Those kidneys are not happy with us right now.  But she looks great!  We love you little one!

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.