Advocating

I have been…..I think the PC word is ……advocating in Bella’s behalf.  A lot and often.  And fortunately things are happening.  Good things.

I had to go home last night.  This admission wasn’t planned (are they ever?) and my babies weren’t prepared.  When I came in and did my inspection I could tell her IV was gone.  That was her third.  They were lasting about 12 hours.  She just doesn’t have much left and what she has is hidden under all the chub.  :)

As the Kangaroo Krew was searching her body for any vein to use, we decided that she really doesn’t seem to have any infection, although she is growing a couple of things in her trach.  No access was therefore required – yeah!  I told the doc I could kiss him.  Bella’s veins were saved!  The conclusion is that this is pulmonary hypertension.  She outgrew her meds.  So this is a pit stop to re-tune everything.  The beautiful thing about being in the hospital is you get multi-disciplinary care.  The bad part is you have to be in the hospital to get multi-disciplinary care.  Oh well!  We are getting that tune-up and I’m grateful for it.  Her med increases are starting today.  Here’s hoping for no reactions!

One thing I did ask was how close do we need to watch her weight?  Obviously, this was too long to go without seeing her pulm. doc, and yet it was only 2 months.  And now I know, whenever she starts needing us to turn up her oxygen, I’m to call her pulmonologist, not her PCP.    We talked about the fact that often doctors want to see if the patient is getting better and can just out-grow their meds.  My problem with that is that she had to tank to get everyone’s attention.  I see their point, there is no crystal ball.  But the doctor said, Bella has declared herself.  They won’t be trying to wean her for a while.  We are also thinking about a big girl formula and getting off the preemie formula.  Her birthday is coming up, and we don’t need to worry so much anymore about gaining weight.  :)  Every single doctor that has come through the door has told us that we need to cut calories.  (shaking my head)  It’s not like she’s sneaking chocolate cake at night.  Oh well, we’ll get it right. 

I am grateful that we getting answers to some of the questions that I have had.  Some things are still unanswered, like the vomiting.  She has a continual drain on her tummy right now.  There is a significant amount there.  But she is still gagging and trying to vomit, there just isn’t anything to vomit now.  At least she won’t aspirate on it!  :)  Poor thing.

Pictures:  Saying hi to Daddy.  She looks great!  So much better than during a PH crisis.  :)

  The moment everyone left us alone after taking out the bad IV, I picked up Bella and held her and then she got to play in the swing.  With all those wires coming from both sides of the bed, she was stuck in there – not something my spoiled baby liked.  :)