We wanted to all stay together so we went as a family and brought a DVD for the kids to watch for the two-hour appointment. The tests seemed to go alright to our untrained minds but the doctor said he was concerned about the size of one side of her heart. I believe he then said we'd have a follow up soon - I honestly can't remember what he said but he let us go home.
We came home, got everyone situated and I laid down. I opened my eyes when I heard Jeff come into the room and saw he had the phone in his hand. He said "The doctor is on the phone, he's concerned about Ellie, you need to get the other phone". We then both were on the line and the doctor explained he'd sent Ellie's pictures to the Atlanta cardiology team and we scribbled down some things on this little piece of paper. Jeff's handwriting was the original, I wrote some in later to add clarity.
These are conversations these types of doctors have routinely but to the parents of healthy, typical children - it might have well been in Chinese.
First of all, we had no clue what pulmonary hypertension was. We were told though that the doctor in Atlanta that viewed her echo-cardiogram (what I sometimes call ultrasound for simplicity) was a cardiologist specializing in pulmonary (lung) disease. So, this doctor wanted Ellie in the hospital - immediately. We wrote down "cardiac catheterization", "sedation", "pressures in lungs". Then the topic turned to "aspiration" and getting "milk in her lungs".
Then the words "hospital this evening", "testing in morning" and "cardiac step down unit" were mentioned. Oh and also the name of a doctor who would be handling Ellie's case was said. Jeff wrote "Dash Pande" (last name sounded like "pand-day"). I asked if there was any way possible we could have the night to arrange child care and pack up and get there first thing in the morning. He said "Ok, but you'll need to be there by 6:00 a.m. to register". Cool, we can do that.
Then we hung up...looked at each other very confused...and I began doing what any good reporter would do. I started making calls. So I rolled up my sleeves, got my pen out, looked up a number and made the first logical call...the hospital. The hospital where Ellie was born. The hospital in Columbus. The hospital to which kids are transferred from around the area for specialized medical care. Yes, we'd just left there two weeks go and not to mention spent an entire day there at 10 days of age getting blood work done. (that was a rough day, we went in the morning for a sample - it clotted, so then we went back and spent the afternoon in the pediatric intensive care unit with a nurse who gently drew Ellie's blood) So imagine the confusion when the lady I spoke to had NO idea who "Dash Panday" was. We must have spelled it 10 different ways. Also, the doctor had said the cardiac step down unit was on the 2nd floor. The lady on the phone from the hospital kept saying "you mean 3rd floor?" Hmmmm...
Slowly, (and I mean hours later) slowly, it began to occur to us he was talking about Atlanta. That was not a pleasant realization. Luckily it was 4:00 p.m. and I still had time to call their office and speak to a nurse. She offered to email me a wonderful, handy-dandy flyer and map and directions and instructions and lists and layouts and details and names and rules and policies and...phew, now I had all the information I needed to process all this!!!
I saw a phone number on there and got a wonderful nurse on the phone at the cardiac step down unit at Egleston children's hospital (by the way, "step down" is a term used for a transition place to recover from something - mainly heart surgery in this case). She explained how everything worked and said Ellie's room would be waiting for her in the morning. And she also clarified that Dr. Deshpande would be overseeing her care. (we've of course now come to know him and the other cardiologist extremely well)
So we walked around like zombies, putting things in a suitcase. Got childcare set up. Tried to eat, tried not to cry, told the children we'd see them soon and tried to sleep.
