What is it really like?

What does it take to get Greg into a wheel chair-his powered wheel chair?

It takes 2 people to get Greg ready for the day (and I am the extra set of hands) washed, dressed, rolled back and forth as it goes. In between as the secretions get shaken up, we have to call a respiratory tech to do a treatment to get the "gunk"(our official term) for the stuff in his lungs out. So, an hour has past and now I feed him breakfast and in between temperature, blood sugar  etc.is checked, pills are taken and another hour goes by. We roll him back and again to get an abdominal binder on him (it helps with the breathing) and the sling under him. We hook the sling up to a lift and get him to the chair. We see one of his therapists (Speech language path, OT or PT) and then  more respiratory treatments and I feed him lunch, then more therapy and respiratory treatments and then dinner. This is a good day.

Today, however didn't go so smoothly. One of the pills got stuck in his throat. He has to get his pills and food past his trach and past the newly constructed cage in his throat. He has been taking the pills with pudding and why on earth he agreed to take with water, or why on earth the nurse offered this choice, I don't know. Respiratory had to come and suction it out. This left Greg with a sore throat and unable to eat lunch. The whole episode tired him out and the lack of food made it hard for him to concentrate and participate as well as he would have liked in his therapy sessions.

My daughter was in a car accident late morning-she is not hurt, but pretty shaken up. And has to deal with getting the car fixed and trying to meet her school and work obligations. Thank goodness friends came to the rescue for her in Florida. My daughter has been amazing since Greg's accident, coming to NY immediately and being my support and this is just not right for her to have to deal with.

Once you are in the middle of an emotional rollercoaster, the slightest tilt and the accident was more than just a slight tilt, can make your emotions run much higher than normal. In addition, right before we heard from Emily, Greg and I were having a pretty emotional discussion, so needless to say on top of the pill episode we were exhausted emotionally. Finally, Greg was given his night medication which includes a sleep aid, too early. Normally his meds are coordinator to go after the respiratory treatment and to take effect after he goes on the respirator for the evening (which is not an easy transition-Greg breathing on his own and allowing the machine to breath are different. Greg has to be cognizant to make the transition). Taking it too early, also, means he has to be woken up and so he lost 2 hour of precious sleep because it is hard to fall back to sleep. And he will be turned every 2 hours and woken up again and again.

It is hard to write this logically after a day like today, but I am finding writing this blog is helping me get it out of my head and the heaviness pressing on my heart is lifted (as a friend told me it would). I appreciated you reading this and thinking about us.