I have tried on several occasions to write this post without success. However, just the other day, a dear friend suggested I do just this exact thing. She had no idea when she first suggested it that I had tried and failed several times before to share this information, but at her request, I am attempting this feat yet again.
I don’t know why I’ve been so unsuccessful in the past. Perhaps it felt selfish or self-serving. Perhaps I was afraid it would seem I was asking for pity – which I’m not. What I am asking for is understanding. What I am offering is a clearer picture perhaps than what I’ve given before.
Here’s this friend is understanding. This friend has tried perhaps more than any person outside of my immediate family to understand our situation. We talk often and she asks questions – lots of questions! She has and does try as much as is possible for someone NOT living in our home to understand everything, so when I said something in passing about something I was unable to do without another adult present, this friend was shocked that it had never occurred to her. It was a light bulb moment of “Whoa! I never thought about that.” She then told me that if she, who tries extremely hard to understand, didn’t realize this, then surely most other people really had no clue what our life is really like. Therefore, she thought it necessary that I inform the general public about life….as we know it.
So here goes.
Most of you know that Hope needs lots of care, but you might not know what that entails. So here, in the best way I know to explain it, is a rundown of the whys, whats and hows of life with Hope.
- She cannot be left with anyone who is NOT trained in infant CPR with a trach and how to change a trach. Right now, this means my husband or I, a trained nurse, or if necessary, my mother-in-law (who has 39 years experience in Pediatrics, but even she has not had much experience dealing with trachs).
- She has an oxygen concentrator, a compressor/humidifier, a suction machine, a pulse oximeter, and a feeding pump.
- She needs trach care at least once a day. It requires 2 people.
- She has breathing treatments and other meds twice a day.
- Her clothes and bed linens have to be changed several times a day because she creates so much saliva/secretions.
- Her feeding pump is turned on and off 12 times in a day and refilled multiple times. The bag is changed daily. Her G-tube is supposed to be rinsed in between every feeding.
- She sleeps in our room with all of her equipment. Thankfully, at around 6 or 7 months we figured out that the oxygen tube would reach from another room, so we could put it in her room and no longer have our room 15 degrees hotter than the rest of the house. However, we still have her bright glowing Pulse Ox that alarms rather loudly at all hours, her feeding pump that has to be turned on and off at different time, her humidity which is somewhat loud, and her suction machine which is really loud.
- When we aren’t sleeping, she stays in the dining room – crib and all. We don’t hide her off in a bedroom somewhere. She stays in those 2 places. She can’t be carried around because she’s hooked up to the 3 things mentioned before, plus the suction which must be close by.
- Want to watch tv or a movie? Get used to reading subtitles because you can’t hear much unless you are on the other side of the room (which I rarely am).
- I cannot take a shower unless there is another adult in the house because that is enough time for her to plug off and suffocate.
- I cannot give my kids a bath unless there is another adult in the house because I need to be able to get to Hope if she needs me, yet I can’t leave my other kids in the tub.
- I don’t feel comfortable doing the dishes unless another adult is in the house. I can’t be elbow deep in dirty dishes when she needs her trach suctioned (which she does frequently).
- It’s difficult for me to cook at times, for the same reason. I can’t be covered in raw chicken if her trach needs to be suctioned.
- You might have noticed that I’m online MORE when we don’t have a nurse. That’s because she needs suctioning so frequently, especially in the morning, that’s it’s easiest for me to sit close by. Yet, it’s difficult to hold her without someone else here. Why? Well…
- That’s brings me to the next problem. My other children. If you have small children you know – the minute you get tied up or busy, the kids will do something crazy, so I can’t just sit and hold her when no one else is here. If I do, the screaming, hitting, biting, wall-coloring, pants wetting, etc. ensues. Sadly, if no one else is here, she spends most of the day in the bed.
- Along with all of that, she has an hour of in-home therapy 5 days a week, plus a visit from her EI Coordinator every other week. Not to mention, all her appointments.
- When we travel to said appointments, most of her equipment or a portable version of it goes with us, in addition to her diaper bag, “go” bag (has all emergency items – ambu bag, extra trach, etc.), stroller and carrier.
- She can’t really go anywhere without 2 adults – 1 to drive and one to ride in back in case she needs to be suctioned. If I have to, I can take her right up the road to the pediatricians, but usually can’t make it without stopping in the neighborhood to suction her.
- Then there’s the phone calls. Oh, the list of phone calls. Feeding supplies, medical equipment, appointments, Medicaid, medical bills, on and on and on. There is ALWAYS a phone call that needs to be made.
- And that’s just the stuff I can think of…
Add to all of this that my husband works 50+ hours a week.
When I say, “I don’t have time,” I hope you understand that it’s not just a platitude.
When I say I’m tired…words cannot even express.
When I say I’m forgetful…well, just forgive me, please.
When I am stressed about not having a nurse – I hope you can see why.
But when I say that I don’t want to be pitied, I don’t.
Our life is different. Different than it was. Different than yours. Different. Forever different.
And it’s hard. Oh yes, it is hard.
It’s blessed. Very blessed…and it won’t always be this hard.
Weeping may last through the night, but joy comes with the morning. ~ Psalm 30:5
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~ James 1:2-4