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

Tuesday, March 10, 2009

One Week Post-Op

Look who is starting to wake up.  march 10 002 







She has stared at me and held my finger for the past hour.  Very nice!march 10 004







She keeps spiking a fever, so they are running tests to figure that out.  She is on some “big guns” (Nurse Nick’s words) antibiotics.  We’ll see in the next day or two what is growing in there.

Last night our family talked about prayer.  We pray as a family, but last night we prayed specifically and with very real intent.  We prayed for two things in particular.  1- that the chalis would stop or in kid language since God understands us always, that the yellow stuff would stop coming out of her chest and 2- that her pressures would come down or in kid language again that her lungs would relax.  So I have to report to my family the results of our prayer.  The yellow stuff has stopped and the doctors are going to let Bella start eating again  - slowly, but it’s a step forward.  And how are her lungs?  I don’t know, but I do know that the ventilator has been changed so it’s only taking 28 breathes a minute, and she is taking breathes, albeit small ones, on her own.  Good girl, Bella!  I have to tell you that our prayer included another request.  We prayed for our miracles, and then said, “but if not, please sustain our family and Bella through this time.”  He knows all that Bella is going through.  He, the Creator and Master Physician, understands what our girl needs.  He’ll help us through whatever lies ahead. 

Thanks for all the prayers and support y’all!

The doctors were rounding, so I have new info.

We are now in right heart failure – better than complete heart failure!  As Nurse Nick explained it to me, her heart was completely open in the middle, so she had one pressure in her heart.  Now she has 4 chambers – so she has 4 pressures.  Before her heart just kinda did everything together, now each chamber has it’s own job.  And her body and brain have to figure this out.  Her right ventricle is still acting like it’s on the left side and using too much pressure to send the blood to the lungs.  He said with time and all the meds she is on, she’ll be OK.  Do they realize when they say that that I put all my faith in those words?

He did tell the doctors that when she is suctioned (they clean out the vent) or even just when they open the vent to remove the excessive water buildup that she does not tolerate being off the NO (nitric oxide) well.  She takes about 30 minutes to fully recovery.   Just Shelly now, but it looks like NO will be a part of Bella’s life for a bit.  Dr. Dickerson did tell me yesterday that they have sent kids home on NO nasal canulas before.  OK.

I found out what a pulmonary crisis is.  It’s what happened on Friday when she got all marbly, turned blue, and decided she didn’t like putting oxygen in her body very well.  They are really on top of it.  They stop a lot of those by sedating her.  At 3PM today, she was really marbly and her hands were going blue, so now she is sleeping.  It helps her to stop fighting her vent and get what she needs.


Kathie said...

WOW Shell, I don't know how you are dealing with all of this - it all sounds so scary to me. I know that the Lord will sustain you and loves you and your family.

Heather said...

Keep on keeping,forward on to another day.Bella looks good and awake time is good news as well.Mommy medicine I call it.Zoey had a difficult time with her heart keeping pace itself so her external pace maker took longer to turn off until the connections came back on their own.Their little hearts have been manipulated and disturbed and they need a chance to get right after what amounts to trauma,even though it was being fixed.Saying prayers for progress forward for the sweet love.

Ann RN SMMC said...

She looks like her old self in the latest picture ~ wonderful to see. Nurse Nick sounds like a great resource and a comfort for you, trying to understand Bella's complicated little heart (and lungs). Heather is right. It takes time to heal and there isn't much that will speed it up. Everyone from SMMC sends their love!