It seems like we go along in survival-mode for a month or two at a time; have some highs, a few lows, and then we crash. Because really, in spite of the hope we have for life getting back to “normal” when chemo ends, I know it won’t be. It will just be “less crazy”.
After the last several nights, I wonder how we will survive…sustain, long term. Phoebe is awake constantly at night, wanting food. This is not abnormal for her, it just seems to be getting worse with no explanation.
Nathan usually takes the night shift for a couple of a reasons; first, he sleeps like a rock so he doesn’t wake up every time Phoebe talks or make a request, which is good because she will sometimes go back to sleep if he doesn’t answer. And second, I wake up and home-school the boys and this way, he can sleep off the night before with Phoebe. I am a very light sleeper and am usually awake most of the night when I take Phoebe night-shift, and I am unable to sleep once the sun is up. This isn’t a sustainable way to live, we know, but we were hoping things would get better when her body wasn’t so out of whack from chemo. Now we know it’s her constant hunger that keeps her awake more than anything, and aside from a miracle, that won’t change.
A typical night in our house goes like this:
At 8pm Nathan does devotions with the boys while I lie down with Phoebe and get her to sleep. At 9pm I go in and give her her DDAVP shot. I fill her water bag up with water and Potassium for the night. At 10 pm we go in and give her Melatonin and plug her ng tube in to her water bag . At midnight one of us goes in to administer her meds. Then we can go to sleep. No more meds until 8 am.
She usually sleeps decently until around 2am minus some complaining about tummy pain from the Potassium or the need for a diaper change. At 2 am the eating begins. We have tried re-directing her, distracting her, giving her Ativan so she will sleep it off, giving her a food she doesn’t much care for as the only option, etc. Nothing works. So we started putting a bowl of Cheerios by her bed at night. When she says she’s hungry, we give her the bowl of Cheerios. She will often eat for a bit then fall back to sleep. When she wants to munch, she just grabs a handful of Cheerios.Lately, a bowl of Cheerios hasn’t been enough. It’s been 4 bowls. I get up 2 or 3 times a night to check in on her since Nathan sleeps heavily and I can often hear her crying. She has unexplained pain in her bottom that keeps her up and makes her want her diaper changed frequently. Most mornings there are 6 or 7 diapers on the bedside table. In the morning, I shake out the sheets and clean up the Cheerios off the floor and toss all the diapers while Nathan sleeps off all of the waking-up he did. Her room gets vacuumed daily.
When she wakes up, she usually eats 2 or 3 “breakfasts”. This morning for instance, she has had 2 waffles, 2 cheese quesadillas and an orange. There does not currently exist any type of appetite suppresant medicine that does not work by signaling the pituitary gland to “trick” it into thinking the tummy is full. She has no pituitary function whatsoever, so a normal appetite suppresant will not work for her.
How can we live like this? I thought having a newborn was difficult, that was a piece of cake compared to this. We are on our third appeal with insurance for a night nurse, or even just a night helper who’s not a nurse, so we can get some sleep. But they keep denying us, saying that she’s not “sick enough”. I wonder what qualifies a family for such help? At any rate, it makes life feel hopeless. Eventually Nathan will be back at work, and then I suppose our only option will be to put the kids in school and me take night shift and try to sleep during the day while watching Phoebe and Deacon? What a life. Survival.
I’m certainly not the only one in the world with a child with special needs, but without some sort of help, I don’t know how care-givers do it. Being constantly exhausted steals initiative, makes us irritable with each other, and makes it hard to dream about the future. We need a miracle.
Having so many friends who have lost children to this disease, I feel ridiculous when I make posts like this. We still have Phoebe here with us, and there are just as many precious moments in the wee hours as there are difficult ones. I guess I’m just trying to figure out how we make this new life work…