The Hard Road - Part III

When we left the pediatric cardiology office on Halloween Eve, we were numb and in a state of disbelief at the news of Joy’s decline. Maybe we had been naïve, but putting the occluder in seemed such an “easy fix.” We knew we still had a ways to go health-wise but we thought Joy would be climbing hills instead of mountains.

We had Joshua with us because he had his cardiology appointment as well. I questioned the wisdom of having them both seen together (think emotional AND technical equaling major brain cramp). Because we went over the results of the second opinion from Boston Children’s on Joshua, Bob had decided to attend the appointments. For that, I was ever so grateful and those results are a story for another day. Apparently we needed a distraction because half-way home, Joshua decided to throw up. A lot. I don’t know if the waiting room was hot, he was carsick, or maybe he was upset that we were talking about him.

We went home to wait for the call from Boston to set up an appointment for Joy to be seen by the PH team there. We were told to expect to hear from them early the following week.

When your cell phone rings at 5:00pm on a Friday night and it’s the cardiologist on the line, I learned that “Uh-Oh!” is an appropriate response.

The team had reviewed the echo findings and after talking to Boston, everyone concurred that they should try to remove the occluder. 

Jaw drop.  Huh? 

Yes, the cath doctor thought he could retrieve the occluder as long as it hadn’t grown into the heart.  Obviously there was a short window of time when that would be possible without tearing and damaging the heart tissue. We were three weeks out from the first cath.  By opening the PDA back up, they would be allowing the pressures to re-equalize and the heart would have a pop off valve. 

For Joy, this meant a very shortened life-span and basically being thrown into the same bucket as Joshua: unrepairable and quality of life.

The only way to really know if the echo was correct (there is a margin of error) was to repeat the heart cath and measure the pressures. If they were 80% or above, they would attempt to remove the occluder. If they were below that, the doctors would probably leave it alone. Our doctor told us that he had asked people to take a hard look at their schedules and he would be in touch by Tuesday with a date for Joy to return to the hospital for another cath.  

My own heart returned to my stomach leaving a very sick and unsettled feeling which remained with me most of the weekend.

Monday morning, the phone rang and our amazing cardiologist was on the line, again! He had thought about Joy all weekend and decided that because the cath doctor at our usual hospital was out of town that we should go directly to Boston. In fact, he was wanting Joy to be admitted for observation even before a cath was scheduled. Like that afternoon. That's a heart-stopper. 

Talk about being catapulted into the high-risk category. We had some worst-case scenario discussions and I was to wait for a call from Dr. Marshall in Boston who would let me know what was decided.   

After a flurry of phone calls, by 2:00 pm on Monday, it was decided that we would check into Boston on Tuesday, Nov 6 by 10:00 am and the heart cath would take place on Wednesday, Nov 7.

Alrighty then. I had less than seventeen hours to get some serious ducks in a row. I furiously did laundry, made a menu for 4 days with instructions, cancelled appointments, systematically worked through the schedule making sure everyone got to where they needed to go, and packed some clothes for what I hoped was only going to be a few days. I was ever so grateful for my oldest son, neighbors, friends, and others willing to help out on short notice. 

We planned to be on our way to Boston at 7:00 am on Tuesday.

Part IV: The Boston plan and the cracker story.