Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Thursday, December 16, 2010

CV-ICU (CardioVascular Intensive Care Unit)

After hours and hours of waiting, we finally got to see our boy....and to those of you who know me, you know that I am not typically afraid of medical things.  I like to watch it on t.v....I work in people's mouths each day at work....but there is something very, very different about seeing your child on a gurney with tubes and bandages and monitors and in a medically induced coma.  I nearly fainted twice and almost threw up.  I had to leave.  Which is completely opposite of what I expected of myself.  He woke up at one point when they were trying to get the right balance of pain meds and sedation meds.  The nurse, Dorothy, was attempting to suction his breathing tube and he immediately woke up and started trying to pull the tube out of his mouth; he was coughing and it looked like he was drowning or something.  He saw me there and I didn't know what to do; Dorothy had to hold him down, so he wouldnt pull the tube, and she told me to go to the nurses station to get help.  I ran down the hall and another nurse came in and they were able to adjust the sedation meds and suction and settle him down.  Apparantly this is a good sign, meaning that he is healthy and fighting to get better.  Simultaneously very scary.

There are so many sad-looking families here.  The only thing I can think of is "pick your poison".  They are not all heart families; I have seen little kids with no hair (cancer); I have seen tiny babies being wheeled out in incubators; I have talked to a family whose 2 1/2 year old little girl has a possible fatal case of strep A and may have to have her fingers and toes amputated.  It is just so horrible that people have to go through this.  But in the same breath, I am so thankful we are here and have an amazing team helping our Nicholas.

Nicholas will be intubated until tomorrow mid-morning, when they will start weaning him off the ventilator.  As he takes on more of the natural breathing function and his heart responds favorably, they will eventually take him off the breathing machine.  Then we can expect to stay for a couple more days in the CVICU and when he passes all the criteria, we will move upstairs to the recovery rooms for a few more days.

I'll keep ya posted.  Love to all who are thinking of and praying for us.
 

2 comments:

  1. Hi Brenna - thanks for the update...it's so hard to watch your child in this situation...You're all in our prayers! Hope he gets moved up and out of the ward quickly! Hey - we must have another thing in common....are you a dental hygienist/assistant/dentist? I'm a dental assistant!
    Keep us posted!

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  2. Hey Mom,

    We are all thinking about and praying for the little guy.

    Love you,

    Everybody at home

    ReplyDelete