No more nurse

I'm done. We've tried 3 nurses and I'm really just done. The truth is LVNs don't have the training or knowledge base to handle my kiddo and the ones they've sent me don't seem to have the ability to understand the seriousness of it all. I'm not sure I even blogged the full reasons we let nurse #2 go but suffice to say her actions(or lack there of) put my child in jeopardy not once but twice and what I discovered yesterday with nurse #3 is inexcusable. These are life and death issues and I mean that quite literally. Its not really completely their fault, they don't have the formal training/knowledge to handle it. I was told RNs in this area don't do home health/shift work so I could have an LVN. The LVN could do supportive work for me IE her laundry, clean her room, bleach out her personal fridge, stock and organise supplies, do weekly supply order, give her g-tube feeds and medications, attend/assist at therapy appointments, bathing/changing. I was also told this person could attend school with her, and stay home with her when I had errands appointments I needed to be at without her. The problem is this, stuff happens all the time that requires observation and intervention that relate to her line and important fluid and electrolite issues. Her pumps alarm(FOR A REASON) simply TURNING THEM OFF and not calling me is a HUGE HUGE HUGE problem. Casually mentioning it HOURS after the fact is beyond inexcusable. TPN is quite literally life support for my child. Turning off her pump and not clamping her lines, not flushing her lines means blood can backflow into the hub and she can develope an infection which could lead to DEATH. Her line could clot off which could also lead to infection and necessitate the need for major surgery! On top of that I discovered the fact that now twice in the past few days the nurse improperly used our gastric pressure relief bags. I am using them to vent her tummy over night and then if she is about to throw up I am dropping the bag letting some of the bile/vomit flow into the bag. Just enough to take some of the pressure off. Once she stops retching I clamp off the bag. I have explained this repeatedly to the nurse and several times I have found out she let the bags fill to bursting without notifing me in the moment or replacing any of the fluids. If you take it out you need to PUT IT BACK save causing serious imbalances. So not only have we been dealing with this but several times I have found her laundry not put away after the nurse leaves, or syringes left unwashed, supply orders just not done or supply orders filled out saying we need items we dont and not indicating items we do need. On top of all of this Marissa has gone down hill fast. It gets worse everyday instead of better. After the first week with nurse #3 she started having a lot of anxiety. She would begin to cry(scream/thrash/hit herself) the moment the nurse arrived in the morning. At first it was just when the nurse was doing care for her and then progressed to ANYONE doing anything for her but me. This includes Shana and Raechelle who are both primary(secondary?) caregivers for her, beascially they are both also as good as mommy--or WERE. To the point that she will cry if I leave the room or anyone else even talks to her. She stopped sleeping at night crying for me all night long. The amount of food she has been able to tollerate has decreased drastically and her vomitting has increased from not at all to daily to twice daily plus. Basically my life is hell right now. Im not getting any sleep and the illusion of help is just f*cking with me because it is without a doubt nothing more than a hinderance and disapointment. SOOOOOOOOOO starting Monday I will no longer have a nurse. Im going back to doing it mostly on my own. THIS time I am hiring help in other ways. Our current house keeper is moving out of state so I will be replacing her with a part time nanny/housekeeper. I will hire someone to come in two days per week. This person will be responsible for ALL school transportation( 3 kids 3 different schools to and from) and watching Mackenzie while I take Marissa to PT and OT. She will also be responsible for cleaning(all 3)bathrooms, vacuuming the whole house, dusting and mopping the kitchen floor. Insurance wont pay for this person like it would pay for a nurse....But my sanity and my daughters LIFE means it will be worth it.