Exhausted

Today is a bad day. I am sleep deprived, my brain is not firing on all cylinders, and I am emotionally fried. I knew this would happen but it still sucks. Today I let feelings that I work very hard to keep under wraps into my mind. Thoughts of how unfair this is. Regrets over decisions made. And blame being placed where it shouldn't. Today I am mad. Mad that I have a child with special needs. Mad that we have to depend on others to care for him. Mad that those we depend on are not always reliable. I am so mad! I wish I could take my son out in the snow. I wish I could hold him without having to suction his airway. I wish he could talk to me and tell me how he feels. I wish this wasn't so hard. Like I said, today is a bad day and what I say here is true but is said at a very weak moment. I love my son more than anything. He is disabled and medically fragile. That brings an odd and complicated living situation where we have to rely on others to help us care for him. These are not family members or the babysitter down the block. These are nurses that do this as a job. We are in a transition period that is very difficult. We have strangers in our home on a daily basis. In time they will not be strangers. Soon they will be an extension of our family unit. I feel very vulnerable and out of control when it comes to this. I have to give control to a home health agency who hires and schedules the staff. I have to worry that a nurse will call in sick or not show up. I am this child's mother, and it is my job to care for him but his 24/7 needs of meds and monitoring around the clock is too much for a set of parents to accomplish while taking care of another child and working outside of the home. What this rant comes down to is...I am a control freak that is out of control. I may not be answering phone calls and emails right now as I am doing my best to keep it together. I have to focus on family right now and how to make this transition work. I am procrastinating many things in order to survive the day to day tasks. I am sure I will sing a different tune in a week or two. Enough about me and on to the Logan update... He is doing well. I love to see him in his own clothes! He is sleeping a lot and does not tolerate a ton of activity. We are trying to tweak his humidification system. Logan has what is called a trach collar. It is basically a mask that goes over his trach and hooks to tubing. He has an IV pole that houses machines that humidify air and oxygen and then deliver it to Logan's trach. Because we are bypassing his upper airway he loses the natural humidification that the nose provides. If the air is not humid enough, Logan's secretions thicken. In turn he then has difficulty coughing them up and we have difficulty suctioning it. He has had a lot of drops in his oxygen saturation today. He is on oxygen and we are playing with some of his medications to encourage his secretions to thin out. This is a fine balance. When the secretions are too thin, he needs more suctioning which can often stimulate increased secretions. It also makes it hard for him to sleep because he is constantly woken up from the secretions in his trach. Right now he is watching basketball with his dad! It is so good to see him home and content. As I finish this post I already feel more relaxed. These occasional releases of the relief valve are often therapeutic!