Pulmonology

Usually these appointments go well.  Our doctor is a very upbeat man.  He is the head of the lung transplant team, so really in comparison, our lung issues are minor.  Our lungs work (mostly) after all!  My concerns are usually smoothed over and all is right in the world again.  Not so much this time.  This last hospital stay with our almost intubation and our pulmonary hypertension excitement was our first really big scare since decannulation.  Sure we have had pneunomias, but she recovers.  He told me that this PH component will most likely be the norm whenever she gets a serious virus.  She'll look fine when she's well, but when she's sick, it'll act up and can be serious.  Strong words from this doc. Then he added that as she ages, it'll get worse.  What?  We had been so focused on getting her better.  And she is doing awesome.  I thought this was pretty much off my radar.  Oh no.  I guess PH is our friend for life.

Then we got to wait around for three hours to have a repeat ECHO.  They want to know if the PH has gone down or not.  Well, Bella is feeling better.  So she fought tooth and nail.  To the point we don't get to have ECHOs anymore.  Not the normal way.  She is too old for sedation, so the only way they will do it is to do it under general Anesthesia.  Really?  Sigh!

So kinda of a double whammy today.  The appointment that was supposed to be no big deal, kinda was.  And the standard test was rejected.  Bella is just keeping it interesting!!

Meanwhile to offset some of that yuckiness, Miss Bella and her cuteness:

Bella’s Week

It has been a week of recovery.  Today we are off oxygen – she made it through the night without needing any!  Yeah, Bella!!

She’s Home

weak as a kitten, still has her nasal cannula, but home…..so grateful

Sunday Morning

Bella had a good night and is now at 5 liters and 40% oxygen. The next step is to go to a normal nasal cannula and down to 4 liters. :)

Keep this up and Bella will be home in no time.

Bella got a bath this morning and complained the whole time.  Once it was done we had this as the result.  One very happy Bella.

Bella also has been using FaceTime with Sammi and Joy.  They sang songs and laughed.  Really good to see her feeling better.

A good Saturday

Bella started out Saturday in the PICU on third floor at 8 liters of oxygen at 60%, and ended the day on the 7th floor at the PCU in private room at 6 liters of oxygen at 40%. 

This is great as we are no longer in the ICU and we are weaning down the oxygen. 

Pulmonary Hypertension

Wonder of wonders, the cardiologists were able to read Ms. I'm Not Gonna Sit Still's ECHO.  Surprise! Our friend pulmonary hypertension is back. Why not with the way this stay is going?  Well, at least we know.  If she doesn't turn around, they can add INO (nitric) to every thing else, but you have to be in the ICU to be on Nitric, so here's praying for a good night and that we won't have to go there.

Not where we wanted to be

Well, today finds us in the ICU.  They just weren't comfortable with her on 8 liters at 100% and stating in the upper 80s when she was asleep.  They didn't want to have to do an emergency intubation on the PCU floor.  They felt she would be safer in ICU.

ICU is obviously not my favorite place to be, nor is it Bell's.  She is on high alert here.  Every sound, every person freaks her out.  She had another EKG and they attempted an ECHO.  I'm not expecting much from the ECHO.  She was fighting against them so much. 

My Mom came to visit which was nice.  It is nice to not be alone here.  To not be alone with my thoughts and memories.

The kid next to us is where Bell was five years ago.  Vent, nitric, he's not in a good place.  Oh, this place in full of memories.

Meanwhile, my baby girl is doing OK all things considered.  I'm hoping we'll be out of here by tomorrow.  Her left lung is involved now, and her eyes look dazed and sick, but I'm thinking she really just needs lots of time and rest to beat this.  Fight on brave girl, fight on.