The Hard Road - Part IV - Boston Bound

Next stop: Boston Children's Hospital.

Wanting to avoid having two cars in the city, we wondered who might be available (on very short notice) to take Joy and I down to Boston on Tuesday. The plan was for Bob to join us on Wednesday for the heart cath.

God laid it on my friend Kristel's heart to drop everything and bring me to Boston. And when I say drop everything, I mean leaving her 15 month son at home and halting her house packing for a whole morning. This is Tuesday. Kristel and her family are leaving on Friday to move halfway across the country. Not only was I incredibly grateful for the ride from someone who knows Boston well, but we also got to spend quality time together before she left.

Here we are grinning wildly in the lobby trying desperately not to cry. Which we did anyway. The gift of friendship is precious indeed. Thank you, Kristel, for being part of the journey. You held my heart and my hand all the way to Boston and you are a prayer warrior, for sure.

Once we arrived, we went to the 8th floor and were sent back down to Admitting. That took awhile. We colored and played in the waiting room. When our name was called, we went to do paperwork. As we got into the office, my phone started going off with Massachusetts numbers. Finally, I rudely answered one and it was one of the cardiac doctors. They wanted to know when Joy had last eaten because they were considering doing the heart cath today. 

"Uh, uh, I think she had rice cakes a few minutes ago and some water," I stammered.

What? Here I am in Boston with Joy, by myself, and we're going ahead with the cath? A bit overwhelming.

Once we got settled into our room on the 8th floor, a few things had to happen before she would be ready for the cath lab. One of them was another echo to check on those pesky pressures.

Here is a God moment. The tech who came to do Joy's echo was Chinese and spoke Mandarin to her for a whole hour telling her how pretty and good she was. I'm not sure how much she understood but she did nod a few times and was relaxed enough to fall asleep since it had already been a long day.

During the echo, about a bazillion doctors swung through to meet Joy. In Boston there are medical students, residents, fellows, and attending physicians. Then there were more from the cath lab and several visits from anesthesia. It was a wild three hours and I definitely lost track of who was who. I never had time to even call my husband and tell him what was going on.  

Dr. Marshall came and introduced herself to us. She was very kind and Joy was her patient while we were in Boston. Dr. Lock, the best heart cath guru (as the nurses called him) possibly in the country also came to visit and here is why.

There were three plans for Joy:

A) If, during the cath, the pressures were reasonably low (below something like 80%) then they would leave everything the way it was.

B) If the pressures were higher than they were comfortable with, then Dr. Lock was going to try and take out the occluder because to leave it in under the circumstances of high pressure would put Joy at high risk for collapse and death. In his words, "I'm not going to pull very hard." Imagining a piece of metal going into my kid's heart was difficult enough, but thinking about it coming out was tough, tough, tough.  

C) If the occluder needed to come out but they were unable to retrieve it, they would wake Joy up and plan to go back to the cath lab a few days later to make another hole, creating a man-made PDA, in her heart. Dr. Lock has done this three times in the cath lab and all three patients survived. So I was told.  

Plan C would only have happened in Boston. I was glad that was where we landed.    

Next up was getting an IV and a chest X-ray. I made the nurse stop by the elevators long enough to call Bob and tell him what was going on. It all felt very rushed. I was afraid they were hurrying because of the urgency of the situation but it turned out they had an opening in the schedule and were trying to be prudent. 

 Joy had a few rice cakes around 10:45 am with a bit of water. Anesthesia finally decided that 4:30pm for the cath would be fine and I proceeded to sign all the permission papers. At some point during the afternoon, I decided to get on the merry-go-round and let it happen. Less time to worry. Just get it over with, right?

Around 3:30, we were ready to go and waiting in the room for them to call us down. Joy doesn't really watch TV so we were dressing up, taking pictures,  and the Child Life Specialist had brought some toys down. As another mom, the nurse and I were standing in the doorway chatting, all of the sudden the nurse exclaimed in disbelief, "She's eating!" 

Sure enough, the little bugger had got ahold of the bag of rice cakes and had one in her mouth. I fished it out and was pretty confident that that she hadn't eaten any. So was the nurse. 

But not anesthesia. They pulled the plug. Oops. I think there were some mad doctors. 

Initially I was irritated but then felt some serious relief. I had felt a little railroaded and was unprepared for things to happen that fast so it all worked out in the end. 

We were put on the schedule for third case the next morning. That was disconcerting because Joy would not be able to eat after midnight and third case could be called as late as early afternoon. Kids who grew up in orphanages and can't speak English don't do real well when you withhold food. 

After the decision was made to cancel the cath that afternoon, I let the poor kid eat and eat and eat some more.

A highlight in Boston was spending time playing with Ivy Joy who has had three open heart surgeries and is scheduled for a fourth tomorrow (11/14/12). Ivy is as sweet as she looks and her smile grabs your heart and squeezes. Mary, her mom, is calm and full of the kind of peace that only God provides. She was a great comfort to me during all of the hullabaloo that afternoon. We took the girls down to the cafeteria for dinner and got to know each other a bit. 

Ironically, Ivy Joy is from the same orphanage as Joshua and we had already planned to visit Ivy at some point during her time here. Little did I know we would get a direct first class ticket to Boston Children's.  

Part V - In which Joy has her heart cath leaving us with more questions than answers....