Posts Tagged ‘Therapies’

Today was one of those days where kept biting my tongue to keep from saying, “What else can go wrong today.” That is not something you say when you have a medically complex child.  Fortunate for me none of the ever rising issues directly were related to his health. I needed a drink by 10 am it was so crazy. I’m certain the lack of sleep had absolutely nothing at all to do with making my overall mood and disposition.

It began with my son’s ventilator and pulse ox alarms ringing through the night. Of course the nurse has no idea why, but strangely after blaring for minutes and getting up to investigate out of concern when I would make it to his bedroom they miraculously ceased. After the 6th time in 3 hours I got a bit irritated and made the wife investigate afterward. How horrible of me and I apologized this morning to her for that. I was really close to just sending the nurse home and caring for him myself, as I have done on many a night. For each time she would be reading her book and my questioning of why was always answered with a shrug.

“Nice, glad to know you are paying close attention to my son.” I mumbled on my final visit.

The morning report was not any better. Apparently, the medicine port on his G-tube had, “come open, but only a small amount got on his clothing.” She did change him, but upon looking in the bed and seeing a soaked stain on the sheets off from where he was sleeping I went over to the laundry basket to see how small a spot. It was more like dollar bill size. Keep in mind my son is a whopping 17lbs and 27in long so a dollar bill covers the length of his torso. I was furious at her diminished assessment of the amount of feeds lost not to mention the fact that his sheets were still soaked.

That was followed by my son’s speech therapist calling saying that she had not left her home yet and would be 20 minutes late. Which I stated wold not work because we had occupational therapy scheduled right after. Speech decided she could overlap and co-treat, but would have to cut us short so she could catch up her schedule. WHAT? Did I hear that right? You want to slight my son to make up for your inadequacies and inability to be punctual. That’s the spirit of early intervention. Then OT calls says she is running behind as well, by 45 minutes. I nearly cancelled as we still had cares to finish before noon, when my wife would need to leave for work, both of which require two people. Trach tube change and a post surgical dilation process we are in the midst of.  Instead of 45 minutes late she ended up being 90 minutes. Then the pharmacy call telling us a prescription refill is ready that should have never been filled…long story, but essentially they shorted us 10 mL on a 1 day med, only giving us 12 1/2 days worth. I asked if we really needed to refill an 80 mL bottle because they screwed up. I told them I’d call his doctor and see if he needed that day and a half which we didn’t need, but the pharmacy found it in their infinite wisdom to refill this anyway.

Finally the day ended with my Home Health Agency case manager coming to do her bi-monthly paperwork. This is also about my only opportunity to express displeasure to anyone about our continual lack of staffing and properly trained nurses. That turned in to something that leaves me smiling at the end of the day. As usual they placed blame on everyone but themselves, including me citing that I need to be more accepting that nurses and should take the time to train them better. I’m not even going there that is another topic. Then she went into this budgetary rant about the agency being in a money crunch and how they are trying to find way to tighten up and how communication needs to improve among the office staff. I literally started laughing and said, “well the first place you should look is how to fill you open cases such as mine.” I know they have many cases that have staffing woes similar to mine. Open shifts do not make money, it is simple. The reason I laughed at her is I told her this, her boss this and even the Vice President 6 months ago that basic business dictates you have to supply the product (nurses) to the client (patient) in order to render the service in which you expect to receive payment for. She did not appreciate that and I did not care 🙂 I’ll end it here more to come later.

Thanks for reading my point of view,



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