I belong to several trach/vent support groups on Facebook. One of the most talked about issues is nursing care. Some of these women have hit my last nerve. So here goes.
Noah has never had nursing. Our insurance doesn't cover it and there no way we could afford to pay for nurses out of pocket so nursing has never really been an option for us. That being said, I know that some people need nurses. Maybe their child is extremely vent dependent., maybe they work outside the home, maybe they are a single parent. For whatever reason, nursing is necessary for them. I get that. But what I don't get is these moms who don't seem to know how to care for their child. The moms who won't step foot outside their house during the winter, ones who are scared of using candles or perfume or having pets, ones who do not take their trached children to the beach or the pool. I understand it's necessary to be careful but these kids need to experience LIFE. They need the sand on their toes and the sun on their face. They need to go to parks, zoos, movies, restaurants and experience all that life has to give. I will be the first to admit how hard it is when you have to carry a ventilator, pulse ox, go bag and your baby. It took me several trips to the car just to get stuff loaded. It's a hassle for sure but one that is worth it. I feel so sad for these kids who are stuck at home and don't get to do anything.
I've heard all the reasons for having nurses.
"It's safer to have someone watch your little one 24/7".
"Having a nurse at home is a must"
"You are a mom". (Not a nurse)
"There are no second chances for mistakes"
"You need sleep"
Yes I am a mom but I am also a chef, chauffeur, teacher, laundress, secretary, and nurse. Every mom is these things. Special needs mommies just have more of the mommy nurse role. No, there are no second chances but there's no second chances for anyone. Yes, I do need sleep but so do all the mommies of newborns and daddies who work night shifts. No, having a nurse at home is not a must. We have done just fine for the last 5 years without one. As for 24/7 watch, how would you like if someone sat beside you every day all day watching your every move. There's no privacy.
I really do get that 24/7 nursing is important for some people. I'm afraid, though. that these moms are becoming too dependent on other people to care for their child. They don't know how to do trach care, they don't bathe their own children, they rely on these nurses to handle all of the medical issues (trach care, suctioning, trach changes, vent alarms, etc.) This is dangerous! A few months ago a little boy died because his nurse did not know his trach was out!!! These parents lost their child because a NURSE was not properly trained. Just because someone has a nurse's license doesn't mean they know how to care for our child. Not to mention, all of the schedulelng conflicts, nurses sleeping on the job, messing up the house and the lack of privacy.
If you have nursing and love them then I'm glad. All I'm saying is that you need to be sure, completely 100% sure, that you can take care of your child's medical needs yourself. Don't be afraid to do this. It's your child and nobody knows that child better than you. Don't be afraid to ask questions. Build up a list if resources you can contact if you're not sure of something. Don't listen to the people who say it can't be done. It can. It's just takes a lot of effort, planning and learning. I just don't want trach/vent moms to be scared of their own kids. They are just kids, they just need a little extra help. Do not be afraid to rely on yourself. Trust your instincts. Please, whatever you do,
don't condemn those of us who don't have nurses. Our children are not in any more danger than yours.
I am so blessed that our hospital trained me so well. It took several months but by the time I left the hospital with Noah, I knew how to care for him completely. No, I am not a licensed nurse but I do know the nursing skills needed to care for my own child. Our pulmonary team made sure we had the right training and the confidence to handle things ourselves and for that I will be forever grateful.