"Home" from the hospital

We made it out of the hospital and over to David's sister, Dara's, house, which is just about 25 minutes from the hospital. Before we left, Dr. Taylor gave us another lesson in turning the distractor, and had both of us do it from beginning to end so we feel completely comfortable with the responsibility. I'm not sure either of us are going to ever feel completely comfortable with it, because it's incredibly strange to attach a wrench to your child's head and turn a screw, knowing that you are actually moving the bones of her skull apart while you turn. But since we have no option, we want to make sure we understand EXACTLY what we are doing. We have decided to follow the lead of the nurses in the hospital who double-check absolutely everything they do, and we will make sure that both of us are present every time we turn the distractor and that we are verifying that we are turning in the right direction.

I knew going into this that I wasn't going to love having the distractor to deal with, but I underestimated how nervous it would make me. It's basically a hollow metal tube that protrudes from Leah's skin about two inches. It's straight, and is attached to her skull with six sets of screws. Because of where it is placed, it does touch whatever Leah is laying on when her head is straight, and when she turns her head to her right, it digs into whatever she is on if it's a soft material, like a mattress. If she laying on a hard surface, like the floor or in a car seat, the distractor prevents her from continuing to turn her head. When I notice this, I try to move to her left side or move a toy towards her left, so she will turn her head in that direction, but I know that I won't be able to catch her every time she does this. Dr. Taylor has assured us that it won't hurt her, and if she turns her head far enough to the right so that it does hurt her, she will just turn her head the other way. I'm unsure that I buy that completely, and so I'm still worried about it. Every time I look at the distractor, I'm surprised that there's no better design for the device...something with some kind of protective material around it, etc. The reason there is not, though, is that because it is embedded in her skull, there's essentially an open wound on her skin that is reopened every time we turn the device. It does bleed a bit all day, and bleeds a fair bit when we turn it, so we are keeping pre-folded cloth diapers under it at all times. If it were covered, or padded, that material would create a dark, wet environment that would undoubtedly attract bacteria and would quickly get infected. The way that the distractor exits her skin allows us to clean it out with hydrogen perixode and to keep it dry, which minimizes the possibility of infection.

Dr. Taylor did say, though, that we have to be careful not to snag the distractor on something. We also have to make sure that nothing catches on it and pulls it away from her head. We have just started to hold her upright today, and already I have caught it on my shirt, and my mother-in-law caught it on her shirt as well when we got to Dara's house. It's actually pretty easy to catch it on things, and when I am holding Leah upright and she turns her head, it just seems like it's in the way, or right in my face. There have been many, many times today in which I have thought, "Two days down and 28 days to go..."

The other thing that is more difficult about the distractor than I had imagined is that it is very hard to look at. Walking out of the hospital carrying Leah was actually a very difficult thing to do today. I know that her appearance is pretty startling, but it's hard to see the shock in people's eyes when they first see her. She does look like a child who is undergoing chemotherapy because of her shaved head AND who has undergone brain surgery because of her swelling and zig-zag shaped scar. On top of that, the distractor resembles a nail coming out of her head. I understand that it can be a lot to take in, and I feel bad when I see people notice her and look away quickly. On our walk out of the hospital, I noticed that children tend to look at her for a long time, while adults will take very quick glances, but will keep looking away to be polite. I also know that when we take Leah out in public this will be even harder, because today we were in a hospital where almost all of other people around us were dealing with, and accustomed to seeing, children with medical conditions of their own. In public, that won't be the case.

On the other hand, I felt very lucky to be walking out of CHOP today, since I know that there are so many children there who will not be leaving anytime soon. Leah's condition can be corrected, while many of theirs can only be managed. Some of their stories are just incredibly hard, and the things they are facing are infinitely more difficult that what we have faced in the last few days. When we moved onto the general surgical floor yesterday, we were moved into a shared room. At CHOP, the hospital "rules" for a shared room are different than they are for private rooms, and while a parent can stay overnight in a shared room, they are not supposed to use the room's bathroom. The room to which we were moved was also occupied by a boy who looked to be about ten who clearly had craniofacial anomalies and severe developmental delays. He was playing in a hospital crib with a toy that was meant for a toddler. I think he was in the hospital for the placement of a tracheal tube, but he clearly had other medical conditions as well. When we arrived, he was being attended by a nurse. I asked her if I could use the bathroom to express breastmilk, and she told me to go ahead. "There's no parent for this patient," she said, which seemed to me both shocking and incredibly sad at the same time. I knew the little boy's name was Calep from the sign on the door (like Caleb, but with a "p" at the end) and that's such an unusual name that I couldn't stop thinking about who named him, what happened to that person, and why he was here alone. As we put Leah's things in the room and put her in the crib, and as all four of us (me, David, his sister and his mom) leaned over her and sang to her and exclaimed about what a great baby she was and how much better she was going to feel soon, I couldn't help but think about Calep and how he had no one standing over him. It really made me wonder why the world is arranged the way it is, and why some kids have so much while others have so little.