Today’s answer is home nursing. It’s been a little over a month now that we have reenlisted the help of nurses to assist with Wyatt’s daily needs. We are approved for 16 hours a day and chose to apply those hours to daytime care only. We have previously established that night nursing is more of a hassle than actual help to us because Wyatt sleeps so much better with us in our room. It just didn’t work out for our family to have Wyatt be watched by a nurse at night in his own room when it only led to him getting woken up frequently, then thinking it’s party time for several hours and throwing even more episodes than usual. In our room he now actually sleeps all the way through the night most nights. Is it ideal that we don’t have night nursing? That’s a simple “no” because there is the very real risk factor of us sleeping through or not responding properly to alarms in the middle of the night. But our family made the decision that the risk of our potential lack of response outweighs the risk factor of the potential short and long term consequences of Wyatt having an increased number of cyanotic episodes. To some doctors that decision sounds irresponsible; to us it has been a huge improvement in Wyatt’s overall daily behavior and therefore treatment. That said, once my inability to deal with the daily stress hit, we decided we need to try to get as many of the daily 16 hours covered as possible to try to find some relief. While we have found four good nurses so far, unfortunately only two of them have been put on Wyatt’s regular weekly schedule. I have spoken with our case manager at the nursing agency, as well as their staffing manager several times. Our case manager has yet to show up for her monthly visit to check on things and restock all the nurses’ paperwork, as well as pick up the stack of old paperwork. I had to make it clear to both of them on several occasions that sending me a nurse just to fill a time slot was the opposite of helpful. It takes a lot of time and effort to train a nurse on Wyatt’s condition and care and to also have Wyatt get comfortable enough with that nurse to even let him/her hold Wyatt. That doesn’t happen in just one shift, especially not at Wyatt’s age of 10months old when stranger anxiety hits full force. In order to find a nurse that would qualify as a good fit though, I unfortunately have to go through the hassle of having them come for a shift to see how they do, especially how they respond to Wyatt’s lovely episodes. Still they keep sending me fill in nurses who have no availability to stay on long term. And trust me, to save everyone from agony, that’s one of the first questions I ask the nurses when they come for their first shift. Well, let’s just say the last few weeks have been challenging to say the least. I’m done seeing my share of nurses who only went into home nursing because they couldn’t hack it anywhere else. I personally know some great nurses so I know they are out there but man, the scope of what I’ve seen lately has been right out of tragic comedy, except it gets old very quickly and I’m not laughing anymore. One nurses came to orientate, talked the big talk about his experience level, never asked questions or said that he wasn’t comfortable, and then walked right out after only three hours of seeing multiple episodes. You made another one run, good job Wyatt. Then you have the paperwork pushers who will write pages after pages of patient progress notes and logs while never lifting a finger or even looking up long enough to know what progress was truly made by the patient that day. We have also had the ones who don’t do any charting in their entire 8-12 hour shift, don’t help out with anything unless directly asked to do so but then make up stuff to make their paperwork look good at the end of the day. Some nurses simply lack the ability to interact with babies yet they stay in pediatric nursing. I don’t get it. And finally yesterday evening, we had the one with complete lack of common sense who insists on hovering over you at the worst possible moments, yet not doing what needs to be done until it becomes pointless. Let me give you an example of last night. She asked a lot of questions, took a lot of notes and kind of just sat back and watched. I figured, ok, she has to figure out how we do things first and warm up to us, no big deal. By late afternoon however she has taken up our entire table on the back porch for over 2 hours to transfer her notes from her notebook to the actual paperwork required by the nursing agency while I’m sitting there holding Wyatt, suctioning him, playing with him and keeping an eye on the other three kids while my husband was cooking dinner. Then when she got the hint that we were ready to set that table for dinner, she asked to switch seats with me to use my side table so she could finish her charting. I politely informed her that I had to stay next to Wyatt to keep an eye on him and that she is more than welcome to do her paperwork inside the house as Wyatt will be joining us at the dinner table and we have plenty of eyes on him. She rolled her eyes at me seemingly uncomfortable to be out of sight from Wyatt (even though she had yet to interact with him) and sat down on the bench a few feet away. After dinner my seven and ten year old carried the plates back into the kitchen and accidently dropped and broke a glass plate that shattered into hundreds of pieces all over the kitchen floor. My husband was holding Wyatt so I ran into the kitchen and see my kids panicked standing in the middle of broken glass barefooted. I tell them to not move, I get my flip-flops on and carry them one by one back outside onto the back porch so I could clean up the glass pieces. What does the nurse do? Totally oblivious to what had just happened even though she saw, heard and even commented on the whole drama, she waltzed right into the kitchen walking straight through the pile of glass because it was getting close to 8 o’clock and she wanted to get Wyatt’s milk ready. I was stunned. I couldn’t believe my eyes. I didn’t even know what to say. I loudly announced that NOONE was allowed in the kitchen until I was finished cleaning up the hundreds of broken glass pieces. In the middle of still cleaning up the mess, she asked me again if she wanted me to get his feed ready now. My blood pressure was starting to rise. I calmly told her that we are holding off on the feed until after I was finished cleaning up the glass pieces, then we will give Wyatt a bath and then we will hook up his feed. Not even two minutes later, she asked me the same question again. At that point I just snapped back at her nd said “No. Bath first, then feed!” Around 9pm when we had finished Wyatt’s care and all the other kids were already in bed, my husband was holding Wyatt on the sofa trying to get him to go to sleep. Louder than she had spoken all day, the nurse of course had to ask another question right as Wyatt was almost asleep, which then woke him back up and mad him so mad that he went into an episode. Another 30minutes later, again writing up more paperwork, it suddenly dawned on her to want to clean out the suction canister right as the suction bag is already hanging on my shoulder and I’m heading up the stairs to get Wyatt to bed. She actually came up behind me as I’m walking with the bag towards the stairs and tried to stop me by holding onto the bag. What the heck? I told her not to bother; we’ll just clean it in the morning. Common sense apparently was not in her genes. I couldn’t wait for her to go. Normally we have the nurses leave whenever Wyatt goes to sleep at night because that’s when we like to go to bed, too. Unfortunately, this nurse though being yet another fill in didn’t come in her own car and was unable to get a hold of her ride until the end of her shift. So I had the pleasure of hanging out with her until 11p… These are the moments that make you want to pull your hair out and make you wonder whether it’s truly worth it to have home nursing in the first place. Yes, on Wyatt’s bad days it’s nice to have a second person there. And there are days where we are simply exhausted. But then again, particularly on Wyatt’s bad days, he doesn’t want anyone else to take care of him. Even with the good nurses, it’s not all smooth sailing either. I have a different parenting approach than they do so we sometimes clash for that reason alone. We don’t treat Wyatt any differently than we did our other three kids when they were his age. We like the prolonged snuggle time because we know soon enough he will be at an age where those moments will start to fade away. So having a nurse constantly ask me whether I want them to hold him gets very annoying. I’m sorry I’m not keeping you busy enough but I will never be the parent to just hand over my kid and let you raise him. I like my time with Wyatt and I even like doing most of his care. Somehow though most nurses have a hard time accepting that they are just there to be my second set of hands. It’s a personality clash I guess. The other big issue is the handling of Wyatt’s episodes. Wyatt has learned to use his episodes to his advantage and 50% of the time now he uses it for attention rather than when in discomfort only. One of our good nurses is so set on not letting him have any episodes at all during her shift that she will pick him right up at the slightest sign of a grumpy face. I on the other hand will first try to distract him, remove him from the situation, play a different game or simply tell him no before resorting back to being stuck on the sofa all day holding him. It drives me nuts that she does that and only reinforces his wrong approach to getting attention. The same goes for the regular CO2 checks. They are not my favorite part of Wyatt’s care either but they need to be done because Wyatt’s CO2 levels are the primary issue and there are no other ways of knowing where he is at any given point in time without objectively measuring. Our CO2 monitor however requires us to disconnect and reconnect Wyatt’s ventilator circuit periodically to place the CO2 monitor line. It cannot be left inline with his circuit and therefore this procedure has to be done for each spot check. The nurses however are so scared they will wake him up when trying to do a spot check while he’s sleeping that they have started to forgo the CO2 checks altogether. I have told them that it has to be done otherwise we don’t know when he’s out of range and what ventilator setting adjustments need to be made. I have even shown them some tricks on how to minimize the risk of waking him up. Still I have to constantly be on them about doing the spot checks and it’s starting to piss me off – excuse my language. This is not something that we can slack on. Too low or too high of a CO2 level both have neurological consequences. Checking his CO2 is not something we can skip or take our chances with. It also cannot be predicted strictly based on Wyatt’s behavior whether we think he’s in range or not. Objective measuring is the only way to know where he’s at and when to intervene. Some days I feel like such a broken record and I get so frustrated with nursing. All the reasons why we stopped nursing before are coming back very quickly. I hate having to get up at a certain time every morning to let the nurse in or not be able to get to bed whenever I want to because I still have a nurse sitting in my house. I hate having to be back home at a certain time because it’s the start or end of a shift. I can’t stand having to make numerous phone calls a week just to get all the doctor’s orders updated for the nursing agency when half the time I need to make vent or medication changes in the moment without a new doctor’s order. Keeping up with everyone involved with home nursing is usually a bigger stress factor than Wyatt’s daily care. I’d rather do it all by myself because then at least I wouldn’t have to explain everything I do and I’d know that it actually gets done. It’s such a no win situation.
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