Imagine you have a family member that needs nursing care. You have two options, a nursing facility or home nursing. Which would you choose. Now imagine that family member is your child. I’ll wait……….

Have it pictured in your mind? Okay good.

Nursing facilities can be great or if you are unlucky enough to have your child in extended care in the NICU or PICU you will meet some of the best nurses but it’s nothing like being at home. We were lucky because the NICU Katie was in, she had her own private room and a little privacy. In lots of NICU’s that’s not always the case. Twenty babies put in one room with no privacy, no alone family time, not to mention the chance of infections spreading from baby to baby. For example NEC (Necrotizing Enterocolitis) is contagious and no one knows why. Katie was unfortunate enough to have NEC twice and could have passed it on to another baby if it wasn’t for us having a private room and always great nurses that sanitized everything. Not to mention the stress it puts on the parents and if you have pets your pets too. Never being at home sucks. No home cooked meals, no time to walk the dog. I feel terrible for Jelly having the only time outside being when she needed to go potty. Luckily she’s a pretty chill dog so other than a little separation anxiety she was perfectly happy sleeping on our bed all day.

It’s been so much better having home nursing than being in the hospital. At home you have some semblance of normalcy. Like taking the dog for a much needed walk, oh my god home cooked food and not greasy McDonalds for dinner is delightful. Granted you have an extra person in your house half the time but you get to be home with you baby or child and do normal things like teach them to crawl, walk, play, and talk and so much more. Studies have proven that children grow and do much better at home with their parents than in a hospital like setting and I’d like to believe that Katie is a perfect case of that. Since she’s been home she’s gained 7lbs, can stand, tries so hard to put her feet in her mouth, talks around her trach and much more. I don’t think we would have progressed this far if she was in the hospital because at home I can devote all of the day to her gaining weight and skills.

We get 12 hours a day of nursing for Katie. One nurse works 9a-9p 3 days a week and the other 10-10 3 days a week and on Friday’s they alternate. I honestly don’t know what I would do with out these wonderful women. One has been with us since the day she’s come home and I absolutely adore her. She is so good with Katie and Katie loves her. Hell I love her. She’s professional, I never once have to worry about her alone with Katie and she’s become apart of our family. She is the most professional nurse I’ve ever had the pleasure of knowing. She knows everything about babies with trachs and is patient, kind, and just all around a great person. The other nurse has been with us a few months now and she is also very good with Katie. She likes to play with Katie and Katie adores her as well. I’ve seen her physically get teared up whenever Katie cries that is how much she cares for her charge. They both make life easier for me because I know I can go to sleep and they know what they are doing and don’t have a moment’s worry about them injuring or putting Katie is a dangerous situation. I can’t tell you how lovely it is to know they care for Katie almost like I do. They stay up all night to watch over her kind of like guardian angels if I really think about it.

Recently I found out that home nursing wages were capped off and have stayed the same way for the last 20 years. So the last time they could get more then the capped off amount I was 12 years old. I’m 32 now and that’s just not acceptable. These women and men spend half of their lives taking care of people who otherwise would have to be in the hospital. They give their time, effort and live to the people they take care of and yet cannot get better wages and that is ridiculous. Katie’s bill for the 7 1/2 month stay in the NICU was 1.3 million dollars. 1.3 MILLION DOLLARS. Just the room alone was 600k for 7 months and I guarantee her 9 months of in home nursing hasn’t come close to that amount. Why nursing companies and parents like myself have to fight to make sure the nurses are paid what they should be paid is not right. These are people’s lives we are talking about. Better pay for nurses means you get to hold onto the nurse that are amazing and hopefully attract more nurses to the private sector that will be just as great and maybe be able to weed out the nurses that are terrible at their jobs.

We haven’t always been so lucky with our nurses. Since Katie’s been home one left our case because she fell asleep on the job (big no no) but she was still an awesome nurse just not meant to be on night shift. Two I had them left go. I’ll admit one was for a somewhat petty reason, she wouldn’t stop arguing with me over Katie’s care and overstepped the boundaries. She didn’t like her feeding schedule and would change it on her own accord even though I would confer with multiple people on the schedule to make sure she was getting what she needed. I didn’t feel like arguing with someone 3 days out of the week so I let her go. Once again still a good nurse just didn’t respect that I’m Katie’s mom and she isn’t. The third OMG the third one I could write an entire blog on. I won’t go into it because I don’t want to slander her but let’s just say I thought/still think she’s too dangerous to be anyone’s nurse that has breathing issues or a trach or anything that involves a situation where the patient could aspirate. My point being you are going to have bad apples but if home nurses could get better pay you could weed out the bad ones and attract new talent that want to do their best for their patients and genuinely care about their work and how it effects the families that have them in their home.

I should write a book instead of a blog lol this one is so long I apologize