Decision Time

I was exhausted last night. I had to go back and read what I posted because I was not certain it even made sense. But I promised to keep the site up-to-date. Upon further review it seems last night's post does, indeed, make sense. However, it doesn't offer much detail.

We left the house quite early - before 6 am - for our 8 am appointment at Children's Hospital of Philadelphia. By the time we left it was almost 6 pm. By the time we got home it was almost 9. It was a fairly long day. Physically and emotionally draining.

Here's a run-down of Wednesday, October 19:

6:10 am pull up in front of a dark Starbucks that opens at 6. "CLOSED due to water main break" reads the sign on the door.

7:15 am arrive at CHOP. Using our "sophisticated institutional knowledge" we find our way across the street to an Au Bon Pain for coffee and breakfast.

7:40 am check in on the 6th floor of the Wood Center building in the "Cardiology" department. Find humor in the fact that both the Main Hospital and the Wood Center have cardiology on the 6th floor. We head to the Main Hospital where we're supposed to be.

8 am check in on the 6th floor of Main Hospital.

8:05 am we're back in a prep room. Nurses are asking us questions and filling out paperwork and taking measurements, etc. We're told the doctor who is performing the procedure would like to speak with us.

9:55 am he appears. He is tall, probably 6'5". He doesn't have the same appreciation for personal space I do. He has me backed into a corner. I consider climbing out the window.

10:05 am he walks away having explained to us that there is a chance they may have to put Molly on a breathing tube during the procedure and, if this happens, there is a slight chance she may not be able to breathe on her own again. He agrees to send the surgeon in to see us.

10:10 am the surgeon is sitting with us explaining how the surgery would go and why the catheterization is going to be helpful. He asks us to consider what we're hoping to accomplish from this surgery. He seems concerned that Molly will need assistance breathing and that if she does she may have trouble recovering. He says the catheterization is a good idea because it will give us a lot of additional data. He doesn't seem concerned that Molly will need breathing assistance during this procedure. He tells us he'll contact Genetics to come see us. We're not sure how we feel about the cath doctor; we're positive we like the surgeon.

10:30 am a nice woman arrives to put an IV in Molly's left hand.

10:40 am and three pin holes later Molly has a nice, secure IV in right forearm. Molly doesn't particularly enjoy needles. She also isn't psyched that her last feeding was 12 hours ago.

10:45 am two masked, capped, and scrubbed women arrive to transport Molly to the 3rd floor. We accompany them down the elevator and into the hallway outside the exam room. We say goodbye to Molly and head back up to Cardiology where we meet a geneticist in a private room.

11 am we're joined by a genetics counselor and we continue to answer questions about Erin's pregnancy and ultrasounds. They give us some statistics, which we already know and then we wrap up. We have about 20 minutes so we decide to go outside and make some phone calls.

12:05 pm we're back in the Cardiology Reception area when our nurse comes out to tell us Molly is doing great and she was numbed with local anesthesia and given a mild sedative. No breathing concerns. Next update is in one hour.

12:30 pm we're back across the street at Au Bon Pain having lunch. We decide to eat outside since we have thirty minutes before another update. We make a few more phone calls.

12:50 pm my phone rings. Molly is done. We need to head back to the 6th floor.

1 pm we arrive at the reception area and we're ushered into a conference room; not the same one we met in a few hours earlier. I make a joke about home field advantage and how I think we should switch to the other room. It breaks the tension, but we're both visibly nervous. I refuse to sit down; Erin is maniacally rubbing her "angel of worry". I am assuming they would have told us if something were wrong. I am not sure I am making a good assumption.

1:15 pm Erin's sister Cara arrives to visit on her break (she works at CHOP). We tell her we haven't spoken with anyone yet and she excuses herself to wait in the reception area and eat her lunch (half of Erin's lunch).

1:30 pm Cara is talking to the person at the registration desk. She is using her status as a nurse to gain access to Molly. She passes our waiting room on the way to the recovery area.

1:35 pm Cara is back and she confirms that Molly is ok. She is going back to work. Erin and I are relieved.

1:40 pm the doctor who performed the catheterization arrives to tell us everything went well. Deep down I wonder why no one told us that over the phone and instead made us wait 40 minutes in a private room. I confirm that I am not a huge fan of the cath doctor.

1:45 pm we're back in recovery (which is also the prep room) with Molly. She has to lay still until 4:30 pm. She is mildly sedated but certainly knows we're there. Occasionally she lets out a muted roar. But then she falls asleep again.

2:15 pm the surgeon is back to see us again. We continue to discuss to discuss the risks and scenarios and weigh one versus the other. He shares some of his experiences with us. He gives no indication of what he thinks we should do. Actually that's not even accurate - he doesn't even have an opinion. He recognizes this is entirely a personal decision and we need to come to a conclusion based on what is best for Molly, as her parents. He confirms this by reassuring us there is no right decision. Surgically speaking he has no concerns; he knows he can do the surgery. Recovery is a different story. Progress another still. He wants us to make a decision that "one year from now we'll all look back on and be happy with." He's good people.

2:45, 3, 3:30, etc, we're hanging out. Nurses come by to check on Molly often.

3:45 pm the surgeon returns one final time. He recommends that we take Molly off the schedule for tomorrow and take her home. The decision is agonizing and it can't be made standing in a recovery room on the cardiology floor of the hospital. There is no harm in waiting. He is going to get her on the schedule for next week.

4 pm I call home to let everyone know we're coming home, with Molly, in the next couple hours. I make this call on the way over to Au Bon Pain for the third time today. Three cookies, and another cup of coffee.

4:10 pm I return to the recovery room to find out that the surgeon has Molly on the schedule for Monday. We have to let them know by Friday if we want to have it. I reconsider my previous opinions of our surgeon.

4:20 pm Molly gets set up for her first formula feeding since last night at 11 pm. Her feeding takes about an hour and then we'll be discharged. Cara's shift is over and she is now hanging out with us. The recovery room is now empty except for us.

4:45 pm the geneticist and genetics counselor we met earlier stride through the sliding doors led by a third woman. She identifies herself as, "the one we didn't meet earlier." She washes her hands and asks if she can "look at Molly." She starts to push past me in the chair I am in (something about these people and my space) to get near Molly. The whole other side of the bed is free of people and she is squeezing into a small space between two people in chairs. I completely shut down. I decide I am not going to say anything out of fear that my filter has worn thin; shutting down is safer. I move to the opposite side of the bed and take my I am only here physically stance. A thorough examination ensues. After they ask us the same questions they asked us earlier, and write down the same things they wrote down earlier, and spew the same stats they spewed earlier, the one we didn't meet earlier asks, "So how can we help you?" I swallow my tongue. My angelic wife grins at me, looks back at the one we didn't meet earlier, and politely states, "I don't think you can." Somehow it seems so much nicer coming from her. Have I mentioned how much we like the surgeon?

5:10 pm Molly is finished eating and we're starting to get her ready for discharge. Cara is on her way home. Chinese food is on the menu.

5:35 pm we're walking out of the recovery area and thanking all the nurses who have taken such good care of us. The nurse practitioner [sidebar: we're not sure what the difference is between a nurse and a nurse practitioner. So far in our experiences the only thing we have come up with is that nurse practitioners wear street clothes and nurses wear scrubs. That's probably not it though.] is handing us her card and reminding us to call Friday with our decision.

5:55 pm we're pulling out of the garage and heading home.

7 pm we're eating chinese food and watching Jeopardy with the whole family, at the Logan's. My mom has been there all day, since arriving from Boston at noon.

8:40 pm I am trying to get Gavin into the shower so he can get to bed at a reasonable hour. I have promised him he can watch a show before bed. His lunch still needs to be made. Tomorrow is the big fire house trip. I just want to go to bed.

9:45 pm Gavin is asleep. My mom is holding Molly while she gets her formula; they're both asleep. I am blindly typing an update on this blog. Erin is on the other computer typing a message to her support group. Very, very tired.