Last night I just hit a wall. I have posted before that we have had some issues locating a weekend nurse. Well the regular night nurse had to call in last night because she is injured. Things happen in people's lives and they need to take care of themselves first. However I knew the agency was going to have difficulties locating a nurse the day of and that this probably meant a very long night for Mike and myself. As predicted the agency couldn't find anyone so Mike and I were on duty. I have said it before that Jude is my child and I will do whatever is necessary for him but working a 10 hour nurse shift and then leaving to work a 8 hours shift at another job is hard. Overall Jude really was an angel considering the care he needs. We were trying to get him to sleep and around 10:45 he got so upset. His heart rate shot up and he became very rigid so we gave him some Morphine. This calmed him down and I dug out one of his new Christmas gifts. Let's just say that I highly recommend the Baby Gund Musical Whale. It has lights, music, and calming whale sounds which we know Jude loves. He even tracked the lights as they moved across the Whale. That's a huge accomplishment for a neuro kid.
Jude finally fell alseep and we set our alarms to be back up at 1am for medication and a breathing treatment. Between 2 - 4am he had consistent oxygen issues to the point I just turned the machine off. Then at 5am he needed another round of scheduled medication and his breathing treatment. At 5 I also changed his diaper and blanket because he was sweating. He never opened his eyes but made a few little sounds. Once Charlotte got there this morning I greeted her happily and explained about the night. Then Jude woke up and began coughing terribly and she took over his care. I went to sleep for an hour and then went into work.
I get frustrated at times. Everyone says, "I don't understand how you do this without complaining". Oh I complain just ask my close friends and family. The point is you do what needs to be done to properly care for your child. Last night I even said "I am tired of having a child on hospice but not tired of the child........does that make sense?". I feel like a terrible mother for saying that but my friend understood completely. I told her that some people would reply that it's just a part of Jude but it's not. Jude is not defined by his illness or the label of Hospice. Jude is still a 7 year old little boy who would be running, jumping, and playing if the stroke had not taken that away from him and it's okay to grieve that child. So having nurses in your house, juggling work and home, not having date nights, not having vacation, not being able to leave for Holidays or run to the gas station does take it's toll sometimes. I was in one of those moods last night that no one could say the right thing. Do you ever have those days? The phrases "Sorry", "God doesn't give you more than you can handle", and "everything happens for a reason" made me want to stab a fork in my eye! I reminded myself that people just want to help and sometimes all they can offer are kind words and to accept that gratefully.
So as I left for work this morning I stroked Jude's hair and gave him lots of kisses.I thought of how much he has blessed my life even though that life is sometimes tiring. He was so exhausted from coughing so much that he could only give me a small smile and it didn't last long. I told him I would be home soon to hold him and hopefully he would feel like smiling then.