I know, I sound like a broken record, but I’m starting to wonder again if me doing this night nursing is the wrong idea.
I know my intentions were good. I wanted to be able to have free time with Ethan and Abby after school and on Saturdays without having to worry about Hannah. I also wanted to be able to have a nurse with me for appointments because it just isn’t safe to drive distances more than 5 minutes with Hannah alone (when she gets upset, she pulls at and out her trach).
But I feel like I’m missing so much. I end up going to bed at 5 am or 6 am every day and sleep until 1 pm or so in the afternoon. I feel like the day is all wasted. Not only that, but Hannah is usually asleep at night, so I don’t really get playtime with her (unless she wakes up at 2 am or 3 am or something, which happens about 1/4 of the time). There is a part of me that misses being her #1 playmate and friend every day, a huge part.
I have been giving some more thought about changing to night nursing, 11 pm to 7 am, 7 days a week so I can be more regular. But then I will never have any respite break, and I will lose my car-partner who will help me take care of Hannah on car rides to appointments. Also, I would have to start bringing Hannah with me to pick up carpool every day, which isn’t a quick and easy task to do.
Our regular nurses have been becoming unreliable lately, and we have had quite a few new backup nurses. I know our regular nurses love Hannah like crazy, but if we can’t rely on having someone here on a regular basis, it is very difficult, especially if the nursing company doesn’t have a backup for us. When that happens, I am the one who has to be up for more than 30 hours straight. Our new backup nurses and new Monday nurse are really good, which is a positive and a pro for keeping things the way they are.
I just don’t know. I feel like everyone else in our situation has this all figured out, yet I don’t know if I am really doing the right thing! Daddy and I talk about it often, and we both just don’t know what is best. If we felt Hannah would be safe by herself at night, then it wouldn’t be an issue. But there have been way too many close-calls where she will arch her neck and her trach starts to pop out. Not only that, but I don’t end up finishing feeding her the night formula until 2 am or 3 am.
If we could just get another 15 hours a week or so, then we could get some day nursing help to cover appointments and homework and such. But the only way for us to get more hours is for Hannah’s condition to deteriorate more, and I would rather do night nursing forever and just ‘deal with it’ than to have her suffer any further.
I just really wish I knew what was best.
Carrie, this is such a huge and awful dilemma for you. I was just wondering to myself how do you do it? You have to be exhausted and it doesn’t help that you feel torn. It may seem others have it worked out but they probably have the same issues and just work it the best way possible, but its probably less than they need too. Are your inlaws able to do appts with you? I wish there were easy answers and that we all lived closer to be able to help you during those hours you don’t have nursing. I am sorry you have so many struggles.I wish we lived in a perfect world where more thought was given to families like yours and enough nursing hrs were provided, without fail, equipment was easily aquired thereby allowing you to focus your tine and energy on your family. I know what it is to be overwhelmed and exhausted. Btw, I laughed at your post abt playing the lottery. Might not be a bad idea given the odds you have already beat! Know that we are here for you in any way we can be.
Carrie, how long does Hannah’s feeding last at night? we slow our Hannah’s down so it runs all night…then if you didn’t have a nurse you wouldn’t have to worry about it
I’ve followed your blog since your TX days. I have no idea how I stumbled across it. Your nursing dilemma is really a very major issue that only you can answer. I just know that I feel tired for you sometimes and I have never really met you. Perhaps it would be very hard to do a trial run using a night nurse for a week or so, but it seems it might be worth a try. Also, would insurance be willing to pay for a van transport to appointments. Then you’d have a driver and you could go with as caretaker? It’s just a thought.
I’m confident that every decision you make will be the best, Carrie. You are very attentive, compassionate and knowledgeable so I think you’ll find a solution that will work for you and your family. Is it possible that Carolyn’s idea of van transport will work? Or what Joan said about all night feeding? My thoughts and prayers are with you guys. Take care.