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.




























Friday, December 17, 2010

We heeded the advice from the hospital staff and went to our hotel last night for a good night's rest.  We checked out of our hotel because starting tonight we have access to the parent's lounge where we will "bunk" with 3 other families here at the hospital.  I figure that assuming Nicholas gets taken off the ventilator, one of us will stay with him at all times, and we will take turns sleeping in our little cot.  Could be interesting!

When we got to the hospital this morning, the echo had already been done and the nurse was waiting for the doc's to make rounds with the information from the echo.  It looks like Nicholas is doing very well; he is slightly dehydrated, so they are increasing his fluids, but other than that, the left ventricle seems to be handling the new work load well.  He has had episodes of low blood pressure, which could either be related to the slight dehydration or could be from too much sedation, so they are still trying to get his meds just right.  They may have to give him some lasix, which is a diuretic, to help him urinate if they don't see more urine output after increasing the fluids.  They also have started decreasing his dopamine, which helps the heart contract, to see if he can handle the new work load without meds.  He woke up today and we got to talk to him and explain a little about the tubes (which I might add he is not very fond of) before he drifted back to sleep.  He looks pretty uncomfortable, not from the incision, but from the tubes in his mouth, nose, chest, IV's in both wrists, and one in his neck.  So as he gets stronger and stronger, he should be more comfortable.

The team is monitoring his vitals as they continue to decrease the meds; and when he meets the criteria they are looking for, they will extubate him.  That will probably happen this afternoon.  I'll let you know!

Thanks again to everyone for your thoughts and prayers and all the help we have and are receiving back home!

1 comment:

  1. Hi Brenna,

    A lot of our friends are praying for sweet Nicholas. We love you all. Laura, Wayne & Noah

    ReplyDelete