We have tried to shield our children from fear, disappointment, shock and all the other negative emotions associated with having a medically fragile child. Usually, we are successful. We have always tried to treat it as "normal" and "OK." As a result, both girls think it is just fine to get your milk through a tube. Sabrina will frequently try to hook Catherine's feeding tube into her belly button.
They have both given their stuffed animals pretend IV's and will frequently be seen using masking tape to check a Barbie doll's blood pressure. This is their reality and so it is part of their pretend play.
However, this last surgery has been different because both girls have a heightened awareness and understanding of what is happening. Sabrina helped me pack all of her stuff to go spend a week at Grandpa's. She understood that Catherine would be in the hospital for surgery, although I am not sure if she understood what the surgery was for. Catherine was (and is) well aware of what the surgery was for (she says she will get a te-te tube and a poo-poo tube).
When Catherine came back from the hospital, we had to give her colon irrigations once a day. She also has a catheter bag for now. She currently has two tubes coming out of her abdomen, in addition to her G-tube. The openings are new, so they are still healing. They are bloody and have mucus coming out of them. Her te-te tube looks like there is hamburger meat coming out of it. (Hopefully this will improve with time!)
On last Saturday evening we did the first colon irrigation. Robby and I had never done it before, so we were nervous about how to do it. Catherine sits on the potty while we push 8 ounces of saline into her colon through a new tube. She has to hold her shirt up high so we can see what is happening. While we were pushing it, we kept asking Catherine if it hurt, if she could feel it going in, etc.
Sabrina walked into the bathroom, because we were all in there. She saw the new tubes, with the yucky bloody openings, for the first time. We probably had uneasy, scared looks on our faces.
I turned to look at Sabrina. Her mouth was gaping, her eyes were wide open, and she was staring straight at her sister's tummy. She was totally silent. For the first time ever I saw fear in her face. She had no idea what was happening and had such a look of worry. We had to comfort her and show her the new tubes.
After that first colon irrigation, we are much more comfortable doing it. She has to sit on the potty for 20-30 minutes. We give her the laptop on a desk so she can watch a DVD or play some computer games. Sabrina sits on a stool next to her and also plays on my laptop.
On Monday evening, I was in the office at my desk while they were in the bathroom. Sabrina came running down the hall, full speed, screaming "My sissy needs help!" She has never done that before. So, I ran down the hall to he bathroom. Catherine threw up a little, probably because she was straining during her colon irrigation. She was fine, but it was unusual.
Again, I hated that Sabrina was afraid for her sister. I was proud of her that she ran to me to get help when she thought her sister needed help. That was a mature reaction and I praised her for it. But again, I was so sad that Sabrina had experienced fear.
On Tuesday Catherine spiked a fever and was so sickly that I decided to take her to the ER. Robby was still at work. I called a neighbor to watch Sabrina, but she did not answer. So, on the way out of the neighborhood, I stopped at a neighbor's house. I knocked on the door and begged her to watch Sabrina for what I thought would be 2-3 hours. Sabrina had never stayed at their house and really did not know their kids well. We had seen them at the pool during the summer, but this was essentially dropping Sabrina off at a stranger's house (to her, I knew the mother pretty well). My neighbor said OK, so I got Sabrina out of the car. I told her she would stay here for a few hours while I went to the hospital with Catherine. She asked why and I told her we just needed to go.
Sabrina is quite compliant and easy-going, so she just walked into my neighbor's house. I wonder what she was thinking. Was she worried about her big sister? Did she understand that this was serious? Did she think I was just dumping her off at some one's house? Did she think she was less important than her sister?
Things have settled down since we returned from the hospital after this second stay, so we are trying to act like everything is normal. I am also trying to give Sabrina lots of attention so she feels loved. It is so hard to balance all of this and it is is frequent prayer of mine that Robby and I balance everything (these are not listed in any particular order):
Catherine's medical needs
Catherine's non-medical needs
daily maintenance of self, house, etc.
service to others efforts
social time with friends, family