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

Monday, December 28, 2009

“Bella, Bella, Bella”

That is what Bella’s doctor says about her vomiting.  She has no idea why she continues to vomit so much.  The frequency is actually increasing some.  Poor thing.  We are trying an increased dose of Robinal to see if that will help at all.

The doctor was really sweet to me.  She had to fill out a final medical report for Bella’s court papers.  After laughing at the form, obviously meant for healthy children, she wrote about what a good mother I was.  She didn’t need to do that.  She was very kind.  In other news, we officially have a prognosis, something I haven’t been able to get out of anyone – we are guarded.  Yeah – it’s not poor!  :)

This next section is to record what I am learning so I don’t forget it.  Feel free to skip…

I have been learning a lot about the difference between ventilation and oxygenation lately.  Yes, she did great on Christmas, but it wasn’t good for her to be off so long.  She has had to pay the price since Christmas night.  Oxygen has been our friend since then.

I have learned about the relationship between oxygen and getting off the vent.  One of my questions today was about our goal to get off the vent.  Back in May when she got the trach, she was so fluid sensitive.  She either had to be a little dry or perfectly even.  Any extra fluid went straight to her lungs.  Part of the problem is when she breathes off the vent, she breathes very rapidly.  She pulls and works – hard.  She creates pressure in her chest cavity, so the extra fluid goes in her lungs.    With the trach, the pressures are different, so she can be positive and do fine. Now as we do these trials, she is sating well, but breathing so fast again.  So I asked the doctor, if we get her off the vent, aren’t we back in the same place we were before?  Yep.   It’s a delicate balance she said.  The same thing I have heard other people say.  We have to wait for Bell, but not wait too long.   The hope is that her pulmonary hypertension is controlled and as she grows, her lungs won’t be so bad.  She said she had another patient that had bad PH and was weaned successfully from the vent between 2 and 3 years old.  OK.  A realistic goal is always good to have.  But then in my mind is the pulmonologist that wants to wean her so badly.  Hmmm….  How I wish I could get everyone in the same room at the same time.  I get such contradictory information.  Is this extra fluid floating around in her body cardiac or is it due to her rapid breathing?  Is this something she will outgrow?


1.  Using wisdom, get off the vent twice a day for 30 minutes.  Use O2.  If she is on O2, use more.  If she is at 3 L, don’t do it.

2. Get the nurses to follow this.

3. Robinal trial – watch for adverse reactions.  Heart rate increase or drying out the secretions in her lungs so much that she starts getting plugs.  Is it helping to decrease the emesis?

peptamen_jr_unflav 4. New formula – due to dumping syndrome, we will start with peptamen junior plus nano vm supplement (got to get ahold of all that) instead of pedia sure.  Adverse reactions to watch for – distended tummy or diarrhea, increased fussiness


Lacey said...

You know, Jax is super sensitive to fluid still, at 4 years old. He is on a pretty high dose of diuretics still, when most kids are off diuretics by now. If he gets to much fluid, usually if he has surgery and they start IV fluid, it goes straight to his lungs and his oxygen need goes up. Maybe its just something our kids are sensitive too.
Can you have a care conference? When all your doctors get together to discuss Bella? It sounds like thats what you need.

Heather said...

Wow much info.So much,all for the love of this sweet girl.I just loved the video below.How you stroked and played with her hair and how she looked at you .. pure and beautiful love.Bella will find her way.She already has and she will continue.Prayers from California