We arrived here Tuesday evening, with Erin in terrific spirits. She was as happy and animated as I have ever seen her. Wednesday began with a blood draw at 7, which she stayed completely stoic through. We then followed that up with x-rays, EKG, allergy test, echo, cardiology consult, Social Services, Child Life Services, and then an hour with the surgeon Dr. Dearani. The allergy test, conducted because she once had a reaction to an antibiotic, was challenging as they pricked Erin's arm in 8 spots twice in a row. She never reacted or flinched, but later told us just how painful it was. She is absolutely amazing. She isn't going to let anyone see her react.
Dearani has had additional thoughts about her surgery after consulting with the cardiologist who did the echo. They now have decided that fixing the tricuspid valve offers no upside and thus will be left alone. They are going to fix the ASD, and then take some time to see how she responds before they do the bi-directional glenn.
 |
| Waiting for Dr Dearani |
Erin was somewhat stoic throughout, and fell asleep during the Dearani meeting. She fell asleep the first time as well. I told him it must be something about him.
Erin's favorite store is Target (sorry Uncle Alex). We noticed that they had a Super Target, which really made her happy (it had to be better because it was Super). We visited and bought supplies and a princess costume for Erin, which she took great delight in wearing last night after dinner.
We had to be at the hospital today at 7. She woke up in a great mood, and had yet another bath which included the prescribed 10 minute scrub with special soap.
 |
| Getting ready to leave for the hospital |
We arrived at the hospital and Erin was given a new pink pig, immediately named Piggy. She played in the play area until 8, when we moved into the OR prep area. This was when it became very sobering for Erin. Getting on the gurney caused her to be very apprehensive, although she didn't say a word.
 |
| In the play room |
 |
| Doctoring Piggy |
 |
| Heading to the OR |
In the prep room, we got her dressed and spent some time hanging out. She was extremely clingy as you would expect, and very quiet. She was scared and it was excruciating as a parent not to be able to comfort her or take away the fear. The nurse took a picture of the three of us and printed it our for her. Erin clung to that picture, looking at it constantly. At 9 am, I put her on the gurney and after saying goodbye to Mommy we headed off to the OR.
In the OR, I transferred her to the operating table, and helped to take off her top. She asked for grape flavored gas (she had a wide choice...I would have taken bubble gum personally), and accepted the mask while I held her hand. She was out in less than a minute. It was only then that she let go of the family photo.
 |
| She was worried I was going to doctor her |
It took almost an hour to get all of the lines in her, which they don't do until she is out .At 10:14, the communicator Colleen informed us that they had made the incision. At 11:03, she went on the heart and lung machine.
And so we wait.
No comments:
Post a Comment