We were getting ready for school this morning and, as usual, we were in a rush. In order for us to get to my son's preschool on time, we need to leave by 7:40 at the latest. I thought we were doing fairly well for time as we were able to get out the door by 7:40 on the dot. But, just as we were leaving, I noticed my son didn't have his braces and shoes on yet. So, I carried those out to the car with me while my husband carried our daughter. Both settled in their car seats, I started the process, for it is a process, of getting my son's braces and shoes on his feet. Max wears DAFOs (Dynamic Ankle-Foot Orthosis) to improve stability and break up some of his high tone due to cerebral palsy. In order to get the braces on properly, both he and I need to be in good positions -- i.e. me directly in front of him so that I can make sure his foot is placed properly. Needless to say, trying to put the DAFOs on while he's in his car seat is a bit trickier because we're at right angles to each other. So, it takes a little longer...so much for getting to school on time.
Once the braces were on, his feeding pump began to beep signaling that the programmed dose had been delivered. (Just to give some background here, Max had a g-tube placed before discharge from the NICU almost 3 years ago. He never got the whole suck-swallow-breathe process and, after 5.5. months, that was the only obstacle to his coming home. So, we made the decision to place the tube during surgery for a Nissen fundoplication -- to address reflux -- and work on the feedings at home.) So, he's had this g-tube for years. Recently, back in November, it was changed to a gj-tube because his reflux symptoms were getting so much worse, even on medications. A trip to the ER at Childrens go us admitted for a week. X-rays indicated that the fundoplication had slipped, suggesting that he might require surgery. My husband and I were not convinced that that would solve the problem. We insisted on waiting and having additional tests done so that we might rule out some other possibilities. In the meantime, in order to decrease the risk of aspiration, we decided that j-tube feedings would be a good idea. (A j-tube empties directly into the jejunem, a portion of the small intestine, thus bypassing the stomach altogether. The patient still gets the nutrition he needs; but the stomach has a chance to rest from the trauma of continuous reflux.)
So, he has this gj-tube, which has been working out very well for him. One annoying problem, however, is that the j-tube port will sometimes come "unplugged" while we're using the g-tube port, causing some of its contents to flow out of the tube. There is a distinct odor to this fluid, reminiscent of sour milk mixed with bile. When I pulled up his shirt to pull out the tubing, I noticed that the j-tube port had come unplugged and there was a very wet patch on his undershirt, as well as his t-shirt. He couldn't go to school like this, so I went back up to our apartment, got a new shirt and changed him in the car.
This is wear the title comes in. I noticed as I was changing him that I had this lump in my throat and I was very emotional. I was frustrated that, yet again, we were going to be late. But I was also very sad for my son who has to endure the discomfort of wearing DAFOs, of having a hole in his stomach and just generally all the handling that takes place when a child has a physical disability. I was overwhelmed with a need to cry, but felt it wasn't appropriate to do so in front of this sweet boy who brings so much joy to our lives. He puts forth so much effort daily to execute the most seemingly simplest of tasks. Compared to what he must endure, my own emotions seem selfish and trivial. Of the two us, I think my son is more justified in his tears.
And, yet, I have these moments of holding back tears and I realize that I am still grieving. I grieve for what could have been, should have been.