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

Friday, June 26, 2009

Meet with the Primary – A Plan

Our current attending felt that Bella would be better served with a primary Intensivist ( that’s a Critical Care doctor that is consistent).  So she asked Dr. Sur to be our Primary.  Dr. Sur is a brilliant physician.  She is extremely thorough.  She grills the PAs.  Someone told me that she has seen many a med student tearful after talking with her.  That being said,  I like the choice.  She listens to me, but she doesn’t just do what I say.  I know that sounds crazy since I have been fighting for doctors to listen to me for so long.  I have learned enough jargon and some do what I tell them to do.  I don’t think I have enough knowledge to be making these decisions.  I want to be listened to.  I want my opinions to count.  But I want someone who understands all of the body’s functions, problems, and complications to make the final decision.  We now have a primary Pulmonologist as well – Dr. Mallory.  And we had already chosen our cardiologist when we went home after heart surgery.  So now we have a team.  All of them are excellent.  Bella is in good hands.  Now when she comes back to TCH (she will at some point they have told me), she has a team in place and new doctors don’t have to get to know her every couple of days.  This team makes the big plans – the attendings do the daily peddling that responds to the acute problems of the day.  But there will be consistency.  I wish they had done this three months ago.  She agreed it would have been a good idea, but better late than never.

One big problem is the pediatrician.  We need one.  So they are going to get us in with Dr. Lewis at the Special Needs Clinic here.  Dr. Sur says that she is excellent – that is high praise from her.

We “officially” have a plan.  I have said this before, but the team has meet, so now it’s official (I hope :)  ).  We went over all of her big problems, all of the long term problems, and all of the short term problems, as well as some housekeeping things (like catch up immunizations).  What it all boils down to is that Bella needs to gain weight. She is 5.28 kg today.  The day to day variations are not as important as the trend – to consistently gain weight.  If she can show an upward trend (and stay healthy), we have a tentative discharge date of July 8th or 9th.

Now, what about her diuretics and her trach trials?  Well, Bella has never been without her diuretics and she has had such a rocky road that they don’t know what her baseline is.  So that is a “we’ll have to see” answer.  The trach trials are going to happen.  Maybe even starting today.  She gets to try for one hour to breathe on her own a day – so either one hour at a time or two half hour times.  But no more than that.  Why?  Because if she is able to do it, it is an increase in effort.  She will burn more calories.  We will be here longer.  So the plan is to see what she can do, but never let her get to distress- good.

She needs to grow.  For her chronic lung disease and her pulmonary hypertension, she needs to get bigger.  What if she doesn’t show an upward trend in the next two weeks (I think she will), then we have to revisit and come up with a new plan.  One that explores why she isn’t gaining. 

I feel like she is in good hands.  I feel like if I lost my notebook, she would still get good care.  That is a good feeling.  Having a discharge date, that is fantastic!!

june 26 001

Asleep with her ladybug.  Some kids have their security blankets or their teddy bears.  For Bel, it’s this lady bug.  They have long, in-depth conversations.  :)  Thanks Ann.  She adores it!

june 26 004


During PT, Bella is getting better every day.  She is smiling and interacting with people.  It’s a wonder to watch.

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