Sometimes I wonder where is all the common sense in the world? Yesterday morning, as I walked his nurse to the door Katharine made a bit of a startling discovery as she went in to Kiss Elias before leaving for work. He was soaked, his clothes, his bed (all three layers) his skin. He was chilly to the touch from being wet. It was his feeds, as we examined the content. Problem was, for some reason the nurse took down his feeding and gastric pressure bag 2 hours prior to the discovery. That means he had to have been wet like this for more than 2 hours. Regardless of the how, when, or why the fact was Elias was soaked and she was doing things to him when I walked in the room to get report, so she should have felt that and either changed him herself or at the very least said hey he is head to toe soaked you should change him, but she did not, she chose to ignore it. The part that really makes me upset, more with myself, but also at the agency is that this was a nurse who we had discussed letting go when they took over the case. Fortunately, before we made that call she had to take a leave of absence. When the need came up again to fill spots she was brought up and we reminded them that she was someone we were not thrilled with and would prefer not to have back. They pushed and pushed, they even had his primary nurse try to convince us to change our minds about her. We did agree to allow her to work only if all other options were exhausted until we were staffed again. This was our mistake and I am angry that they for all intense purposes nagged us until we gave in. Yesterday morning reminded us of why we did not want her back. How can any nurse, wait any person regardless, allow a baby to sit in wet clothes and a puddle of feeds in the bed? That night she also stood there for over a minute while Elias cardiac alarm sounded off. His leads had come off, but after a minute and a half Katharine had to go in there to fix the issue, and again she just stood there and said nothing. Not even thank you, or I’m sorry, nothing, just stood there like a bump on a log. What is that had been a true emergency. I understand the equipment from home to home differ, but if you are unfamiliar OPEN YOUR MOUTH AND ASK! I told the agency yesterday morning when I spoke to them that I was very upset they preyed on me by pushing and pushing for this nurse to work, when we kept saying no. This was the reason why, she is obviously not capable of caring for him. I told them if they even hinted at us taking her again I would yank this case from them and find an agency that listens (if that even exists), NO MEANS NO!
Last night we had a new nurse and it was her first shift. Mostly it went fine, but for some reason she took it upon herself to add more feeds to his pump because, “ it was running low.” Katharine explained he is fed from 9pm-6am continuously then it stops. There is ALSO AN ORDER FOR IT! However, it is in the doctors orders section (which she still should be reading especially on a new case) and not in the Medical Administration Chart. Even with it not there, we specifically spoke the words so she apparently is not listening. So today we have to change the schedule to compensate and try to find a way to get back on schedule, slightly irritating. Apparently the “P” in LPN which stands for practicing is a literal translation and they are not apparently ready for the game. It is just frustrating, and I know that we are not the only parents that have these issues, but that should certainly raise some red flags in the industry. A good nurse is an exception rather than the norm and that seems a little backwards from our country’s value system, or at least the traditional value system.
Elias was very lethargic yesterday and obviously not feeling well, but it was difficult to tell if it was from the surgery or from being soaked for hours and developing a cold. The night before he seemed more like himself so I am less inclined to think it is from the surgery. He had occupational therapy and his therapist could tell he was not feeling himself. He would not let her do very much, so it was an unproductive session, poor little guy. They did some stretches which he did enjoy then was out for a nap. So far this morning he seems better, thankfully. He was a little cranky but soon became playful and had some mommy time. He is still doing the excessive and violent retching episodes that we hoped would go away after the dilatation. We are tracking the number of episodes he has over the weekend and if that has not improved by Monday calling the surgeon. It simply takes so much out of him when they occur, it zaps his energy completely. Finally, Elias is really starting to become interested in touching faces and hair. He has been doing this off and on, but it is becoming more consistent and is absolutely adorable. He places his hands on your cheeks then tries to grab our glasses. Then he usually goes for the nose and mouth then starts again. He did it to me this morning and it completely made Daddy’s day! We simply love the fact that amidst the chaos and frustration Elias can always find a way to put a smile on our face and for that we are gracious and blessed.