A protest to holiday weekends when my child is chronically ill

I thought my dislike for holiday weekends was going to end after we left the hospital. The dislike came about with the realization that everyone who is important to your child's care goes away for the holiday, leaving the place short-staffed, under-supplied, and unfamiliar with what is going on with your child. It continues to be the case at home too.

The durable medical supplies we were to receive are missing and no one is at the company to help with that. The infusion supply company sent me no TPN additives with the order... fortunately someone called me back within the hour, but now someone has to go into work over the holiday weekend and another person has to drive the meds here. It's not my fault, but somehow I feel bad about the situation. We seems to have "events" occur on weekends and holidays, and unfortunately it happens enough that I feel responsible, even though I haven't been the cause 99% of the time. Maybe people just get too distracted by their holiday/weekend plans, or maybe since Peter has so many needs things get missed here and there and it just seems that there are problems often since there are is so much room for error. My strongest opinion is that the companies get too big and we just become another number in the system, and as such no one gives much thought to the total picture. Our IV nutrition company seems to be short on Peter's needed items often. I get a note in the box of supplies that this or that was not in stock about 40% of the time, or something just may be frankly missing. If it were the same person each time handling the ordering, stocking, and shipment of supplies, I think we would fare better. Right now there are too many people who handle his orders from start to finish.

To add to the lack of relaxing here, Peter's main doctor in Boston sent an email that he will be away and if anything happens to contact the GI fellow on call. I never like getting that email and certainly don't share that info with Peter who I am sure would like to take that as a challenge to see just who I would end up contacting then. Hopefully Peter got all of his really sneaky tricks out last week with the PICC line break. He is teasing me now with his leaky G tube and by staying awake very late into the night.

The G tube is leaking SOOOO very badly now. A sanitary napkin is just not doing the same as the allevyn and aquacel and nursing pad combo that was keeping the leaks more contained and a little less in amount. With no durable medical supplies arriving as they should have, MY holiday weekend is not such a holiday at all.