I had no idea what to expect when we first visited Children’s Hospital in Seattle. I had heard wonderful things about the care there, but had never had to put it into perspective as a mother of a potential patient. We packed up early morning, and left plenty of time for the rush hour commute to Seattle. I was worried about trying to navigate my way around the hospital. And apparently, as I drove, I absentmindedly drank a TON of coffee. By the time we arrived, I was sufficiently jittery and well caffienated (on top of nerves). My concerns about being able to find where I needed to be in the hospital were cured when I was met immediately by the reception team ready to direct me.
We had a full day of appointments ahead of us. Lots of doctors, nurses, photographers, social workers, all perfectly scheduled for us to meet one after the other. It was incredible to experience such a thorough staff. Incredible, and draining. Again, we heard all of the same diagnosis material we had heard before, and the tight grip that squeezed my heart every second never lessened. Yet, all the same, there was something indescribable that made me realize this was where Taryn needed to be. We felt resolute in our decision. This would be the staff that would care for our child, that we would trust with an impossible amount of trust (of course, completely riddled with fear).
During the visit a nurse brought in a photo album. She wanted to share with us what to expect during surgery. I had done some research online, but never experienced anything like this. This was real. I’m certain the photo album is a well thought out way of explaining the surgery to future patient parents. It’s a normal album, like you would find on anyone’s coffee table. In fact, it’s so worn, it looks like it’s been around the block some. Inside were pictures of a happy family, that looked just like someone we would relate to. The pictures chronicled their entire stay. There’s no better way to get an idea of what to expect. Seeing images online was hard, but seeing the exact set up for what your child will experience, in such a tangible form, was very hard.
I forced my fear down my throat as I started looking through the album. I didn’t want to cry. I had been strong, holding my tears back all day. There was the happy family, with a sweet little boy. The moments before handing him over to the surgeon (the part I feared the most deep inside). Then, directly after surgery. The photos demonstrated what the cords and monitors would look like, where the drain from the skull would go. The incision. I could feel my emotions building in my chest. And then, I flipped the page to the photos of the little one a couple days after the surgery, and my heart broke. Tears filled my eyes. After the surgery, swelling is expected. The amount of swelling differs depending on the child, as well as the suture that is operated on. This poor little guy had swollen eyes, so swollen that he couldn’t see. They were swollen straight shut for a couple of days! This is a common occurrence in surgery to treat Craniosynostosis. I started to cry in the office, and I couldn’t stop. The pain in that moment was too tangible, but I believe it was worth it to be as prepared as possible for what was coming. At the end of the appointment, we were sure we would schedule with Children’s and they told us a scheduler would follow up to get us a date on the calendar. We were exhausted.
Sure enough, Children’s followed up shortly after our appointment, and we scheduled for December 16. It was close to Christmas, and I was worried that we might not make it out of the hospital in time if any complications occurred for the Holiday to be special for our boys. But, we knew that the surgery needed to be done, and we are blessed with family that would help. The preo-op was scheduled for a month before hand. It’s not common for the pre-op to be scheduled so far in advance of the actual surgery. We were offered a pre-op date the day before surgery, but I wanted time after the pre-op to breathe before the surgery, especially since we lived a ways away from the hospital. I wanted to be at home the night before surgery, with the entire family.
We had a real date. After I got off from the phone with the scheduler, I was a mess. It was real. We had a date. It just repeated in my head. I know we had a date before, but part of me expected it to change based on my initial gut feelings about our care. We had no more second opinions to get. We cancelled with the first facility. And now, for certain, this was real. We had THE date.
I would cringe as I opened my eyes each morning. One day closer. My emotions were so raw. I didn’t know what would make me feel better inside. I would cry at night, endlessly, and George, he would just comfort me. He was the only person in the world who truly understood. My family was so sweet. My friends were so caring. And yet, I would find myself frustrated out of my mind at times when I talked to them. “It’ll all be okay,” they would usually say. And I would want to scream. In all fairness, no one knew what to say to make us feel better. Truly, there likely was nothing that could have been said that was “right.” I felt lost. I prayed every morning, afternoon, evening. Each day I started out on my knees, in tears, beside my bed, thanking the Lord for what we had today, and praying for strength to make it through tomorrow. I wanted so badly just to focus on this next month with Taryn as peacefully as I could. My wild emotions made that very hard.