seriously???

Alright CCHS family, I have to vent about my home nursing dilemma and I’m hoping you guys might be able to offer some advice. I’m so frustrated with nursing lately that I went through phases of anger, guilt and holding back tears today. Quick backstory.

When Wyatt was discharged from the NICU at three months old back in September 2011 we went home with nursing. We had a few good nurses but also had some experiences we could have done without. After some issues with the business ethics of the first home nursing agency, we switched to a new agency in November in a last ditch effort to give it another try. Even though the second agency was providing far better coverage and better overall service, by December we still went from needing a one week break from nursing to cancelling services altogether. And then came the Chicago visit. We were given the speech by doctors that by declining nursing services we were not acting in our son’s best interest and were not providing optimal care and safety. So after some soul searching we decided that maybe due to the negative business experience with the first nursing agency we didn’t give the second agency a fair shot and we agreed to start nursing back up at the end of February.

Well, here we are now and we are back to the same issues that bothered us about nursing from the very beginning. Aside from having a hard time finding good nurses who are willing to learn about CCHS and who can handle the unpredictability of this disorder, we’ve always felt uneasy about nursing for various reasons. From December to February our whole family seemed so much more relaxed and together without nursing. The obvious bumps in the road that come with home nursing are the loss of privacy and having someone else take care of your child. That never sat right with me and probably never will. My husband and I are both very involved in our son’s care and we don’t see it as burden. Of course, there are days when we get frustrated and we’re tired but we don’t consider it to be any more challenging than raising any other infant or toddler. We have always approached Wyatt’s care as family affair. In fact, one of my conditions of agreeing to return to home nursing was that we do not live our life depending on nursing coverage to make any plans such as doctor appointments, and that I will no longer make several phone calls each week to keep every case manager and nurse informed of ongoing treatment or medical order changes. I absolutely hate having to ask for a doctor’s order for everything we do with Wyatt. We made it very clear to the nursing agency as well as every individual nurse that comes into our home that either myself or my husband will always be there and that the nurse is only present as a second set of hands, and only in rare and brief occasions will the nurse get to take over complete care. Well, based on recent conversations with our nursing case manager, our outspoken and very involved approach seems to be limiting the agency’s selection of nurses that they consider a good fit for Wyatt’s case. Another recently discussed issue has been when and where a nurse can accompany Wyatt. Since our private duty nursing coverage is paid for through Medicaid, their guideline state that a nurse can only provide care within the home and to/from doctor’s appointments. We are expected to notify the agency every time we are taking Wyatt anywhere outside of the home and ideally the nurse would be cancelled in advance for that shift. I basically told them that these restrictions make home nursing pointless in Wyatt’s case. We the parents provide his care and having him on house arrest is not helping his social, physical or mental development. If we can’t have nurses sit with him in the backseat of the car for example when we want to go to the park, then what’s the point of having nurses? It’s hard enough living around nursing shifts but to have to ask for permission when and where I can take my son is just an unacceptable flaw in the Medicaid system. I want Wyatt to grow up to be independent and all he is learning so far is what he can’t do. I’m afraid eventually that is going to lead to him believing that he can’t do certain things or at least not without help. That’s bullshit. That is not how I raised any of my other kids and Wyatt will be no different. To top it off, our daytime nurse has been pushing my buttons lately by simply sitting out her shift at our house. She was great in February when she first started with Wyatt but has since lost that original enthusiasm. Wyatt doesn’t want to be near her now when he’s cranky so she has gotten more and more frustrated and I in turn have taken over even more to prevent Wyatt’s endless breath holding episodes. I have tried to explain to the nurse that this is normal baby behavior and that her getting frustrated is only raising the level of tension which Wyatt easily picks up on and therefore only makes matters worse. I have even given her hints on what to try to do to earn his trust but nothing has been working. Worse, over the last few weeks her frustration has led to her distancing herself to the point of slacking on her nursing duties. I even had to talk with the nursing case manager about the fact that she hasn’t been doing CO2 checks despite me telling her repeatedly that they have to be done. She also hasn’t taken any of our instructions on how to look for Wyatt’s cues to prevent episodes and when and how to intervene. When I spoke with the nursing case manager again today, I told her straight out that it seems that this nurse just doesn’t care anymore and no conversation is going to help that. I am done with her sighs and me explaining over and over again what to look out for, yet when I put tough love to use with Wyatt when I try to get to fall asleep by himself for example, she just sits there and plays with her phone instead of observing what I am doing to try to get to know his likes and dislikes better and to start picking up on his cues sooner. I told the case manager I cannot make someone love their job and I cannot teach her to want to get to know my son’s personality. She tried to tell me that during his four hour nap she couldn’t get access to do a CO2 check because he was sleeping on his stomach. She gave me that excuse even though I showed you several times how to do it and I even set it up for her and left the inline co2 monitor part in place already. But she couldn’t get to it in four hours? That’s called not caring. To push matters over the edge though ,the nursing case manager calls me back later today and says that she discussed these issue with the nurse and that the nurse said I am taking away her independence to take care of Wyatt. The nurse said to the case manager that she feels I have been increasingly frustrated, I am acting as if I don’t want nursing and that I am taking over more and more of Wyatt’s care and therefore she is unsure what I want her to do during her shift. Seriously?  Yes, I am taking over more and more because I can predict and prevent cyanotic episodes before alarms sound, whereas the nurse hasn’t applied any of our instructions and suggestions, she doesn’t do shit until a machine alarms at which point it is too late to prevent the cyanotic episode. So, excuse me for not just sitting back and watching her put my son through episode after episode. This is not like the first day of daycare where the child throws a tantrum and then gets used to it after a couple hours. We are talking about a child who does not know how to cry, who faces very real risks of further brain function compromise with each cyanotic breath holding episode. So no, I will not just hand him over to the nurse and put him through this, crossing my fingers that in a few days, a few dozen episodes later, he will simply get over it. Then the nursing case manager proceeded to ask me if I want that nurse to return tomorrow and simply shadow everything I do with Wyatt to give it another try. Their concern is that if I take this nurse of my son’s case then we have no coverage at all. No thanks, I don’t want coming back tomorrow because I cannot bite my tongue at this point. I have no trust left for this nurse and I have no patience left to be civil if she returns. I am perfectly capable of taking care of Wyatt and I don’t want her to stay on his case only to keep the agency out of hot water. Long story short, coming from the nursing agency, I’m one wrongly phrased word away from canceling home nursing altogether again. Based on my personality alone, I know I will never be comfortable with depending on or reporting to someone else about my son’s care. No one is ever going to know him as well as we do and no nurse will ever have the same sincere selfless drive for Wyatt’s best interest and safety as we do. I am so angry right now that I even have to put up with this and listen to these comments. I am angry at doctors for pushing home nursing on us when our gut feeling from the very beginning told us that it wouldn’t be the right decision for our family. I am angry that stupid bullshit like this still rocks me to my core and makes me doubt my parenting choices for my special needs child. I am furious at comments that indicate that a special needs child should be treated differently and that a special needs child should take advantage of special programs. Just because these programs and assistance like home nursing exists, doesn’t automatically mean it is the right or best choice for every case. It is not that simple. In the end it comes down to the parents deciding what they want for their own child’s care and future, how they want to raise their child and what works best for the child’s personality. I will not stand for being told how to raise my child or how much care to provide for him myself… I am not sure that after all this nonsense and unnecessary stress, I am even willing to start looking for another “good fit” nurse again. I think the nursing agency and this one nurse might be right about one thing, I don’t want nursing for my son.