Thu 23 Apr 2009
We’ve had a busy couple of days.
Wednesday morning Jane took Ramona to the cardiologist. She called them on Saturday after Ramona had a what we think was a tet spell. She was playing outside with some other children and turned a bluer color and had a hard time breathing for a short interval. Ramona’s cardiologist scheduled the Wednesday morning appointment.
An echo cardiogram at that appointment showed a couple of things. First, there is a “narrowing” of Ramona’s RVOT, the gortex patch that surgeons put on her heart in June of 2007 to increase blood flow to her branching pulmonary arteries. Second, there is a “thickening” of the heart muscle somewhere near this patch. I use quotes since these are the words the doctors use to describe what they are seeing, but I get the sense there’s a lot more to the story. These 2 developments could explain the spell Ramona had Saturday.
At that appointment, they wanted to admit Ramona right away. There weren’t any beds available at the time, so Jane was able to bring Ramona home for her regular nap. At 3pm the three of us came back to the hospital. Simon stayed at home with Jane’s mom.
The plan was to put Ramona on propranolol, and do a CT scan to get a detailed image of her heart and arteries. The propranolol was started last evening, and the CT scan took place this morning. Based on the results of this scan, we were looking at the possibility of a prolonged hospital stay as we waited for an opening in the cath lab (for a procedure just like the one she had last October) or even an open heart surgery if they’d seen something on the scan that required intervention.
The good news is that the scan didn’t show anything particularly new or shocking. No imminent cath, no open heart surgery. (Eventually the patch will need to be replaced with a larger one but that is a worry for another time.) Ramona will keep her previously scheduled date for the next cath, May 21. I am staying at the hospital for a 2nd night; Jane went home with Simon. We’re here basically for observation on the new meds, and should be discharged tomorrow if things go smoothly.
Jane relayed an exchange she had with Simon at bedtime tonight. He has been worried about his sister and as she held him before putting him in bed she asked him how he was feeling. He burst into tears and cried, “saaaaaad!” Then he cried, “I want my Mona with me!”
It just breaks my heart. We all want our Mona with us.
Thanks for the support, the calls, the emails over the last couple days. Hopefully tomorrow will bring a homecoming.
UPDATE April 24 11:30am
Ramona is home and sleeping soundly in bed. Thanks everyone.