Update 3/28 OFF THE VENT! Penny and Signs · March 28, 2007

Brea is breathing on her own!  She came off the ventilator this morning around 9:15am and it is now 3:18 pm. They have reduced the amount of sedation that she is on and she has been wide AWAKE all day long until just a few minutes ago.  The doctor told her that she looks like a million bucks and I must admit…she does!  Her color has returned and she is watching Barney, playing patty cake, signing and smiling.  Her incision looks great today.  After the surgery it was big, puffy and scary looking but today it is a thin red line.  They no longer use staples but instead use a special glue to close the chest.  I got to see Brea ’s chest x-ray and it looks as if she has bread bag ties down her sternum.  It is a pretty wild thing to see. 




Have you ever wondered if the people you meet in everyday life were put there for you to meet for a reason?  I’ve always believed that everyone that we come across in life is there to teach us something.  Last night I met a lady in the CVICU waiting room who has a daughter here in the heart center.  Her daughter’s name is Penny and she was diagnosed with the same illness 7 years ago.  She also had to have a ventricular Assist Device (works the same as the Berlin Heart but for older kids and adults) to buy her some time until a donor heart became available.  She is now 18 and her mom was telling me that she has led a very normal life for the last 7 years.  She attended school, went camping, went to the prom and has now graduated.  Her mom said that the first year is the toughest because transplant patients have to be weighed twice a day, have their blood pressure taken twice a day, have their temp taken twice a day and their heart rate taken twice a day.  They also have 10-12 RX medications that are given several times a day so just getting the hang of managing and scheduling the medications is an adjustment but she said you adjust and it just becomes part of your lifestyle.  Her daughter is here now because she has started showing signs of rejection but they are treating her and they hope not to have to have another transplant.  This mom gave me so much hope and a much clearer picture of what our future holds with Brea .  I also learned that her daughter is adopted internationally too…it is a small world. 




I wanted to mention to all of my friends who are waiting for their referrals from or might know someone who is having a baby that you should teach your child a few basic signs.  We taught Brea the very basics but it has been a blessing because she has been able to communicate with us even when the tube was still in her throat.  Had she not known how to sign we may not have been able to understand what she was asking for.




I also wanted to remind everyone to put your children in carseats and seatbelts over Spring break.  Most organ donors are accident victims and seatbelts and carseats really do save lives.




I’d also like to take a moment and say thank you for the care packages, prayers shawls, blankets, snacks, stuffed animals, cards, letters, books, drawings, pictures, well wishes, gift cards, monetary donations and most of all your prayers.  I’ve sat down many times to write thank you notes but I seem to run out of time and energy before I get much done.  I’ve said many times to the nurses here that the days turn to night and the nights turn to day and half the time I don’t know what day of the week it is or what time of the day it is.  The nurses and doctors here call it “ICU Psychoses”   




I’m off to play with the Peanut Princess…she should be awake soon if not already.




Have a great day and don’t forget…hug your children.







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