Sunday, February 2, 2014

Nathan's First Year, Part 4: The Pre-Surgery

The day was drawing closer...the day on the calendar that made me shudder every time I looked at it. June 19th. Where I would be handing my baby over to a doctor to operate. I've been through lots of trying, uncertain times with my kids, but this surgery had me more worried than anything else in the past. I also sort of wondered how I would feel about him after the surgery, because I'd grown so accustomed to the way his palate was, and the way I was feeding him. Of course I was grateful that his birth defect could be fixed, as I'm sure many defects can't. I was grateful that so far, he had no significant delays that could indicate a genetic abnormality or syndrome. He really only had the cleft, but it had become a part of who he was, in a way. It's hard to describe what I mean, but I just kept wondering how I would feel and what it would be like after the surgery, when he would be made perfect again. With my other kids I had learned to accept imperfections and differences, so to know that Little N's could be fixed almost without blemish was a new concept to me.

Well, the school year ended, for my kids and my husband, and we were now in the final weeks before the surgery. My mom's flight was still scheduled, and we began talking about our plans and preparations. There is also a lot of mental preparation that goes into getting ready for a surgery. I didn't realize how much so until exactly one week before the surgery, when I got a call from Debbie, the surgery coordinator. After answering politely, I heard:

"Hello, I'm just calling to let you know that we have to reschedule next week's surgery. Dr. Martin had a family emergency and will be gone all next week."

Even sitting here right now, trying to find the right word to describe how I felt in that moment, I have trouble. All of the preparation, mental and physical, suddenly comes crashing down. All your hopes for a date that you had been planning for since March are now gone. Now, I've been canceled on before, plenty of times. And those times usually brought an angry tone toward the scheduler, but I would get over it pretty quickly and look forward to the next date they could give me. However, it's not the same when a surgery is cancelled. It's just not the same.

So I try to reason with Debbie without losing it: "What family emergency? We've got everything ready for this surgery! My mom has a flight scheduled! We've made all the preparations! We are ready! How can you cancel on us?" She simply stated that she could not give the reason, but that we had to reschedule, and also remarked, "Well, wouldn't you want to help your family in an emergency? He has a family, too, just like you, and sometimes things come up." She was short, blunt, and to me, seemed downright rude, like she didn't even care what she had just done to our family. Sure, I care about the surgeon's family, but to me, this wasn't about him! It was about us, the patients, who wanted this surgery to happen. She then gave some available dates, and I told her we weren't sure and that we'd call her back. My husband and I just stared, in shock, anger, frustration. We couldn't believe this happened to us. He was one of the best surgeons at the hospital. We decided on a date, July 31st, reluctantly called her back, and that was that. So now we had a new date...July 31st. Just two weeks before school would start again. But first we had to break the news to my mom, who also could not believe it. After my long rant and then her reassuring words, we tried to move on, and just focus on how all this could have happened for a bigger reason than we knew at the time.

So July came, and we visited my family in Utah for one of my sister's weddings. We had a great time. Before the trip, I decided to stop pumping for Nathan. It was such a difficult decision, but I just knew it was the right time. After all, I had planned to pump until his original surgery date in June, and I had made it to July! And because my milk did not freeze well, I had to go directly to formula, which he transitioned to wonderfully.

And so the summer marched on, and July 31st grew closer. Again those anxious feelings returned, knowing that this surgery was going to happen, and soon. My mom rescheduled her flight, we made the preparations again, and we thought there wasn't a chance in the world that the surgery could be cancelled again. We even joked about the possibility, because the chances were so small!

We were wrong.

We got a call on July 30th, one day before the surgery, and again it was our favorite person, Debbie. This time we couldn't get to the phone, and downstairs we could hear on our answering machine, "Hi, this is Debbie. I'm calling to reschedule the surgery tomorrow. Dr. Martin has an emergency surgery he has to perform tomorrow that is a life-or-death matter. Please give me a call--" My husband starts yelling that we're being cancelled on again. I ran to the phone, hands and voice shaking, and interrupted Debbie's message. Once I got on the line, she repeated what she said, and my only response to her was, "Again?" She paused, and I told her that this happened to us just last month. I could tell she was surprised, but still Debbie continued in her matter-of-fact tone, as if I weren't even a real person, "Oh, I'm sorry. But this patient needs this surgery. Wouldn't you want your child to be operated on if it would save his life? Dr. Martin has to do this surgery tomorrow. Let me give you the next available dates."

I don't think she realized who she was talking to. She was talking to a mom of three children who each have or had health issues. A mom of a daughter on the autism spectrum who was turned away by countless doctors for services I knew she needed. A mom who didn't let anyone push her around when it came to her kids. So let's just say the rest of the conversation did not go well. Me on the verge of tears, angry tears, pleading, demanding, that this surgery happen tomorrow. My husband listening in, making rude comments in the background. Poor Debbie. She probably got this every day. But poor us! Now we have been cancelled on TWICE! When I couldn't get through to Debbie, we ended the call, and I promptly threw the phone at the wall. The big kids watched the phone break apart.

I completely lost it. We called my mom, my mother-in-law, and broke the bad news to them. Everyone was in shock, feeling helpless. After regaining my composure, I called the office, and after talking to a few people, asked to speak to a manager. I told them the whole story, how Debbie didn't seem to care at all about our feelings, only cared about defending Dr. Martin. How we now had two cancellations. How Little N's name needs to be flagged so everyone knew that he could not be cancelled again. I even asked if we could use a different surgeon, but we'd only met Dr. Martin. The manager was much more apologetic and understanding. I then called the human resources of the hospital to report the incident. But no matter what I tried, we weren't getting that surgery back. So we scheduled for August 20th. A Tuesday, the second week of the school year. This made things more complicated. My mom could not change her flight again, so we asked my mother-in-law if the kids could stay with her during the surgery, and they readily agreed. My husband would be in his second week of school, too, so he would miss work at the worst time of the year. But we had to do it for our Little N.

Needless to say, our summer was a nightmare, except for the support of our family. My mother-in-law agreed to take the older kids for a day and a night so my husband and I could de-stress from the whole situation. The kids were spoiled by them and got to go to fun places. My mom decided to fly out as planned, and instead of moping around at our house, she took us all to Disneyland to help us forget about it all. Family really is the best. So August 20th...we crossed our fingers...third time is the charm...

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