Because of Hannah’s trach, somebody has to do the ‘night shift’ with her. There are a multitude of reasons:
- On quite a few occasions, she has pulled out her trach at night. Since she has no breathing issues, we wouldn’t be able to tell. The trach hole (stoma) starts to close up very quickly, and if we don’t have the trach back in within 20 minutes or so, it becomes much more difficult to get it back in. A few hours, and it would be impossible.
- She gets junky at night. Trachiitis, allergies, whatever… she needs suctioning at night sometimes to help her be comfortable. If we don’t suction her in time, she wakes up coughing.
- She wakes up anywhere from 2 am to 6 am. Depending on ‘whatever’ (no rhyme or reason sometimes), Hannah just decides to wake up and stays up for about 2 hours before falling back asleep. If we can get her to sleep until 5 am, then we are happy campers. 6 am? Even happier. 7 am? Rare, but wow, wouldn’t that be great!
- Feedings. Because she needs extra calories to keep her body weight maintained (hypermetabolic), she needs to be fed at night. 60 mL every 45 minutes or so (240 mL).
- If she sleeps with her trach collar, someone has to be there to watch her. She moves around a lot and can pull it out, get tangled, or even yank her trach out with it.
- She gets dry too. When she is junky, we take off her trach collar and HME (plastic humidifier on her trach) so she can dry out. Catch-22 is sometimes she gets too dry, and then she needs to either have a nebulizer/saline treatment or just some saline drops.
Usually families of trach kids take advantage of their nursing time to have the nurse come at night so they can sleep. Hannah is not on a vent (thank goodness), so we only get 8 hours a day, 6 days a week. Our nurses come from 9 am until 5 pm, Monday through Saturday.
Because of Ethan and Abigail, I decided to have nursing during the day so that I could have quality time with them after school until the nurse leaves at 5 pm. Also, it is so helpful to have the nurse come along with me to appointments because Hannah, as you know by now, does not do so well in the car much of the time.
So I stay up, every night, until at least 4 am or 5 am. Daddy will take over at 5 am. If Daddy does not have an early morning out for work, I am lucky and get to sleep until around 8 am or 9 am. (If not, I suffer getting the kids up and ready at 6:30 am — thank goodness we carpool with another wonderful family so they do the morning ride at 8 am!). I will also crash/nap during the day for anywhere between 2 to 3 hours. Sometimes I don’t even get that because Hannah may have a doctor’s appointment or therapy appointment. On the rare days, I will actually sleep from about 5 am until 1 pm in the afternoon – just in time for carpool!
I’m completely exhausted. I know it is not healthy. I feel like I waste much of my day. But I feel this is a sacrifice I have to make for our family. Saturdays are the best – because we can leave Hannah at home with the nurse and we can take Ethan and Abigail out. Even though we make it a point to do events with Hannah, sometimes the older kids just need some “them” time.
You would think I would be getting a lot done at these wee hours of the night. But no, I am too tired. I see 4 laundry baskets that need to be put away, and I just can’t get motivated to do it. I am too tired to read, although I do admit to taking advantage of one or two free Kindle books that I can read on my laptop (I have yet to finish a book, but even a chapter or two of escape is nice).
Our insurance changes on December 1st. That along with Hannah’ s medicaid, I hope will open up some more hours for us. Daddy and I have talked about having to do some night shifts for Hannah because I just don’t know how much longer I can do this. I hate feeling completely unproductive, always too tired to do anything. As soon as we get the new Cigna policy, I can get set up with a case manager and find out how this will affect our nursing and take it from there.
Meanwhile — it is 12:07 am. 4 to 5 hours left to go. Off to do another feeding!
For six years, I’ve been awake at all hours of the night for medical or behavioral reasons. Two to four broken hours of sleep makes for a terrible me.
I know you’re doing what you have to because the situation is what it is, and I’m so glad you sneak in naps where you can. The solutions (for healthier sleep for you) seem few, but I’m glad things might be changing soon to allow for more nursing hours during the night. Even a partial night would help so you could get some sleep. I would tell you to take care of yourself and that you need to be healthy so you can keep doing what you’re doing, but we both know you’re doing what you can all around.
I’ve often said that keeping someone from sleeping, or waking them every 10.5 minutes is a perfect form of torture and I would give away all the secrets in the world for a few solid hours every night.
I’m going to keep you in my prayers (and your sweet Hannah), for strength in the hard moments and grace for when you’re struggling and also for the issue with more nursing hours.
I don’t know how you do it! I am sitting here trying to think of a better way to set up the nursing hours and I’ve got nothing. Maybe you can direct pay someone a couple of nights a week and get a deal. Or a family member could take a night shift once a week. Hopefully the new insurance will help!
Maybe you could at least have one or two night shifts covered during the week this way you could have a break. maybe Tuesday and Thursday. Also- why not do continuous feeds for a set amount of time instead of 45 min a piece. Livvy used to be 55cc/hour over 10hours. You can vent her at the same time if you are worried about gas.