One day out the blue (last Thurs.), I was home doing a second sprint and wanted to increase it to 45 minutes. He aced it. I was so proud of him and he knew it! We were even more ready to push him because Tre` decided that he wanted to start to play with his trach tubing. Believe it or not but he never bother it before. Now I find myself jumping when he grabs at it. There are so things that can go wrong with him doing this. In addition the ventilator, he’s also has a heater humidifier. Basically, it adds moisture to his airway…and where there’s mist there’s condensation. Sometimes there’s a significant amount of water in his tubing so when he swings the tubing or lifts it over his head the waters has but one place to go. The water goes straight down his trachea/ throat. Then we have aspiration!!! It’s happened once. I try to give him something else but he’ll ignore my pleas or take what I have and eventually toss it and turn his attention back to the tubing. Uuuugh!!! While playing with the tubing he also begins to cough/ choke sometimes until he vomits. Did I say uuuugh?

This past Saturday, Victor and I wanted to watch the Mayweather/ De La Hoya fight (Yup, I’m a boxing fan) and we wanted to take him in our room while he sprinted. Victor, Tre`, and I laid in the bed with his pulse oximeter. As his hour approached, I was pleased yet again that I wanted “to see what he can do.” I checked him out and he was happy, comfortable, and not too junkie. I wanted to give him a little nudge. I exceeded his sprinting time and we had him off the vent for 2 HOURS!!! Victor wanted to put him back on because it was past his bedtime and he felt he was off long enough. He was right. I didn’t want to overdo it but in all honesty the temptation was there. Victor and I agree that he’s making great progress with this and he might kick the vent by the end of the summer!

And now the bad news! In my opinion, Bayada (our nursing agency), are a bunch of incompetents!!! There I said it. I can never get reliable nurses and coverage. I’m almost at my wit end with them. At this point I’m trying to be cordial...I NEED to be Dwana. We went from having a pretty good schedule with about five or six nurses. Then the person that is SUPPOSED to assign nurses up and stopped leaving us high and dry. Each call was one excuse after another. We had two nurses after that. One wasn’t reliable. She was either unsanitary or wasn’t confident in her care. She’d literally scream for help if he had a wet burp. I remember banging my knee on the doorway to run for him. Then there’s the last nurse. She’s mentally unstable, whereas though she becomes extremely emotional on any given Sunday. Every few days I’m fortunate to hear about how she wants to commit suicide. Great, I just need this with everything else going on. Thank you ma’am! Can I have another?

Now with the nursing care as it has been, I made sure I notified pulmonary. They are going to try to help us either switch our agency or receive better care and attention; maybe both. Without this, pulmonary will make smaller strides. They would feel more comfortable if I had nursing care (or a second pair of hands) during these changes. Victor can do but so much because he works far from home and by the time he gets home, the day is gone. They wouldn't OK more than 2 hours twice a day.

More good news, we’ll manage!