Updated 7/15/24
NICK SWALLOWS A LOT OF AIR! Vent the air out of his stomach using his G-Tube every 20 minutes or so throughout the day to help with bloating. I judge how often it needs to be done by how much air bubbles out of his stomach when I vent him.
Around 3 to 4 AM
He’s usually awake by this time. I go into his room to check on him. I make sure he’s not in a puddle (diaper leak), adjust his pillows (he moves them sometimes), make sure his feeding tube isn’t clogged (he gets vented all night into a feeding bag with a hole in it), and I put a pillow under the side of his legs. He sleeps mostly on his side but lays on his back a lot, too. When he’s lying on his back, his legs lie sideways on the bed (to his right). I put a pillow under his legs so that his back/hips aren’t twisted so far. The pillow goes under the bed pad so it doesn’t get wet if his diaper leaks. The pillow props up his legs a bit, but not so much that he can’t roll over and go back to sleep. The pillow is on top of the large cabinet right next to his bedroom door. I don’t turn the light on in his room while I’m in there, but if he needs to be changed, there is a battery-operated lantern under his bed, near the head of his bed. I put it under his bed and then turn it on. It’s just bright enough to see, dim enough so that he doesn’t think that it’s time to get up.
6:45
Time to get up. I bring in his morning meds, a sippy cup with water, a bib, warm soapy water in a yogurt container, a yogurt container with just warm water, and a facecloth. Yogurt containers are under the kitchen sink, far right, upside-down on jugs. Soap for soapy water is in a large syringe, same door, top shelf. It’s blue. The soap is rinse-free soap. Just squirt a little bit in one of the yogurt containers and dilute with warm water.
If it’s chilly in his room, I run the electric heater. It’s near his bedroom door.
When it’s time for him to get up, I open the curtains, start the playlist “Vacuum Cleaner” on his phone (his phone is charging on the floor near his bureau), and turn off the fan. Get his clothes and diaper ready. Get a clean blue chux on the seat of his wheelchair if there isn’t one already on it. Everything’s on the cart or in the diaper caddy hanging on the cart.
Change his diaper, and wash him up with the no-rinse body wash from the yogurt container. I’m careful not to touch the tops of his arms without gloves. Every morning I put testosterone gel on his arms and unless he got a shower the day before, there is testosterone residue on his arms. Get him dressed, except for his shirt. Put him in his wheelchair and then…
Wrap a towel around his shoulders, leaving his arms exposed. Towels are in the large green cabinet in his room, rolled up, top right door, bottom shelf.
Give him room temperature, filtered water in his sippy cup. Make sure the no-spill valve is in the lid. He’ll swallow less air by using this.
Using disposable gloves and paper towels, I wash the tops of his arms with plain water and liquid Castile soap. There’s a squirt bottle of castile soap in the little bin on top of his cart. Only use Castile on his arms to wash off the old testosterone gel. Then I put on the green reusable glove that is clipped on the side of the cart. I dip the facecloth in the plain warm water, NOT the soapy water, and use the cloth to rinse his arms off. Then dry his arms..
The testosterone gel is in the little bin on the cart in his room.
Using the green glove I put one pump of testosterone gel on the outer top of each arm, two pumps total. I then slip off the gloves and hang them over the little trash bucket on the cart. I’ll use this glove in a few minutes to rub the gel in again before getting him dressed.
Then I give him his morning meds. Give him Sirolimus, levetiracetam, and Mycophenolate now, on an empty stomach, other than the water. To do this you will need a large syringe (30 or 60 ml) and his feeding tube extension (it attaches to the feeding tube in his stomach).
- Prime the feeding tube extension with filtered water using the large syringe and clamp the tube shut. Check that the feeding tube isn’t leaking near the end that goes in his stomach by pushing water through with the syringe with the other end held shut with your finger (covered with a glove or cloth). Look for the leak near where the clear tube would be glued to the port that gets attached to Nick. Sometimes these tubes leak, and his medicine will wind up leaking out, too. Throw the tube out if it’s leaking.
- With the extension tube primed with water, clamp it, take the syringe off, pull the plunger out of the syringe, and screw the syringe without the plunger back onto the extension tube.
- Attach the extension tube to Nick’s feeding tube in his stomach.
- Put 10ml water in the big syringe.
- Squirt the medications into the water that’s in the big syringe, trying hard not to get the meds on the sides of the large syringe. Rapamune will stick to the side of the large syringe if you get it on it.
- Unclamp the tube, and let the med go down the tube.
- Clamp the tube. Don’t forget to clamp the tube so the meds don’t come out of the tube!
- Remove the big syringe and put the plunger back into the syringe.
- Add a little more water to the big syringe and slowly push the water down the tube to flush the meds into Nick’s stomach. Do this a couple of times so that all the medication is out of the syringe and extension tube and is now in his stomach.
- Clamp the tube.
- Leave the syringe attached with some water still in the tube to keep his stomach contents from backing up the tube. The feeding tube and syringe are used throughout the day to vent air out of his stomach.
Put his slippers, tray, and cloth bib on. Secure his tray with the straps so he doesn’t push it of
7:15 or so…
He waits one hour after meds to eat. Nick spends this time with me in the kitchen getting his meals ready until it’s time for breakfast. He usually likes to listen to the vacuum cleaner on his phone with headphones on while I’m preparing his meals.
Nick will sip on water while he’s waiting for breakfast. He may drop his sippy cup on the floor. I tip it upside down under running hot water and rinse it off for him before I give it back to him.
8:00
It’s time to vent Nick and give him one Pepcid – he has a prescription for this. The prescription name is Famotidine. Make sure you put any liquid that comes out when you vent him back into his stomach. Just crush the Pepcid with the pill crusher, put it in the large syringe and dissolve it in some slightly warm filtered water (with the plunger back in the syringe). Shake the syringe a bit. It doesn’t take long to dissolve. Once it starts dissolving, put it through his feeding tube. Draw up a little more water into the syringe, let it dissolve some more, and put it through the tube. Keep doing this until he gets all the Pepcid. It doesn’t take a lot of water to dissolve it fully and flush the Pepcid through.
He eats breakfast at 8:15 with any supplements needed (this changes – there may or may not be any). See the meds and supplements page. I keep the cloth bib on him. There is a plastic, wipeable bib hanging near the post near the butcher block. Put this on over the cloth bib. Then lift both bibs and Nick will put his hands under the bibs. Place a weighted pad over his arms (it’s in the flip-top basket on the cabinet near the living room). He loves having his hands under the bib with the weighted pad over them. He’s a sensory kind of guy. He also needs to wear his headphones while he eats with quiet music or the vacuum sound playing.
He’ll usually drink some filtered water after breakfast. Have it ready for him to grab when he’s done eating. He’ll be expecting it. If he doesn’t drink the water, make sure he gets it through the feeding tube. He gets at least 1 1/2 liters of water per day.
Vent him throughout the day. Make sure to push any stomach contents that come up the tube back into his stomach.
8:30 – 9
He gets Prednisolone every other day. It goes through the tube. Use the same procedure as morning meds.
Lunch between 11:30 & noon.
Just follow the same procedure as breakfast.
Snack between 2 & 3:30, whenever he’s hungry
Snack is written out on a piece of paper that’s hanging on the refrigerator.
4:00
Help him have a BM with the liquid glycerin around 4:00. To help him have a bowel movement, I use liquid glycerin with an orange, 3ml syringe. They are both located on the cart in his room. The orange syringes have a very smooth tip. He’s more likely to have a BM in the afternoon. He doesn’t go every day but I still try. I ‘induce’ him with the glycerin about 3 times, so he has a bowel movement about 3 times on the days that he goes.
Throughout The Day
Diaper changes as needed using a diaper and a booster pad. You’ll find supplies in his room…on the cart, in the cabinet in his room, in the closet in the front room near the fireplace, and upstairs in a closet, and on the. There’s a bin under his bead with diapers made up with a booster pad. Always put a booster pad in his diaper, but not so far back in the diaper that he’s sitting on it. That wouldn’t be comfortable. It’s not uncommon for Nick to not pee until the afternoon sometimes. He’s always done this.
Vent the air out of his stomach throughout the day.
He eats supper at 5 – 5:30
Just follow the same procedure as breakfast and lunch.
He can have one cup of water after supper.
7:00
Mycophenolate and Levetiracetam. Use the same procedure as morning meds.
8:00
Nick’s gets Pepcid – prescription name is Famotidine – at this time. Follow the same procedure as when he gets Pepcid before breakfast.
Nick goes to bed when sometime after 8. Generally before 9. It depends on how well he’s been sleeping. He may doze off in his wheelchair before bedtime. I don’t put him into bed until 8ish though. He needs to stay in an upright position for about 3 hours after he eats supper.
He needs to be changed into a ‘Night Diaper’ with booster pads in them. More info below.
Brush his teeth before bed, before he gets too tired. I do this while he’s laying in is bed. I use a Sonic toothbrush, no toothpaste. I use a couple of little mason jars with filtered water in them to rinse the brush as I’m brushing his teeth. He and I share the base of the toothbrush. You have to switch out the heads. They’re difficult to remove. Use a glove. The base is plugged in on the bathroom sink. The brush head attached to the base of the toothbrush is mine. His is in the cabinet with all his meds, in a mason jar, far right. If it’s not there, it’s over near the kitchen sink. I spray it every day after brushing his teeth with some food-grade hydrogen peroxide (under the kitchen sink – far right) and allow it to sit for a while. Then I rinse it REALLY well. With the brush head attached to the base, I turn it on and rinse it again with the water in a mason jar. Then put it in a dry mason jar back into the cabinet near the living room.
Nick has grown to like the sonic toothbrush. To brush his teeth, I have the 2 Mason jars with water for rinsing on his cart. I sit on the side of his bed and let him know it’s time to clean his teeth. This is where his personality kicks in :). If he doesn’t feel like having his teeth cleaned, he’ll roll over onto his side and pretend he just wants to go to sleep. If he in the mood for it, he’s happy to comply. He’ll even help hold the brush in his mouth. I need to keep his right hand down, but I only have two hands, so I take his right arm and gently put it under my leg, holding it there very lightly, so I’m not contending with two hands trying to stop me. He’s fine with this and cooperates no problem, but I have to do this several times while brushing his teeth. I never force him to keep his arm there. I brush his teeth the best that he’ll let me. Some days he has fun with it, helping me by holding it in his mouth. On other days it can be a challenge.
Bedtime:
- He wears a specially put together diaper to minimize leaks at night. There should be some in his bureau. Take note of how these night diapers are put together so it can be done again later. The diaper is a Sunkiss diaper with multiple liners. The liners that are used are: Abena Boost (long booster liner…it is the full length of the diaper), and 2 Attends Booster pads stacked.
- Hook him up to a clean, modified feeding tube. Tape it to his diaper using duct tape in two places – a bit to his right of his belly button leaving some slack so it doesn’t get pulled on when he rolls over, and on the side of his left hip. This will keep it from pulling out and kinking overnight. In the image below, the tube doesn’t have enough slack, but it did before he went to bed – things shifted overnight. This image is what it looks like by morning. The diaper had moved from the weight of being wet. I leave some slack in the tube when I hook him up so it doesn’t pull out. Not too much or he’ll get his arm stuck in it:
- Hook the feeding tube up to a modified feeding bag – they’re also ready to go and in his bureau. This is used to vent the air out of his stomach all night. If this isn’t done, he’ll be bloated when he gets up in the morning. He has issues with intestinal motility. I don’t unclamp the feeding tube until he has rolled over in bed and is sleeping, right before I go to bed so food doesn’t back up in the tube. I quietly sneak in and unclamp it.
Modified Feeding Bag:
Cut the clear tube at the green stretchy tube (both ends of the green tube) at a slight angle. Pull the green stretchy tube out of the hard plastic. Push one clear tube into one end of the green tube, and the other clear tube into the other end of the green tube. Now air can flow from one end to the other. Put a 1-inch slice in the top of the bag so air can escape.
I keep the head of his bed raised a little to help with reflux. He has one pillow under his head and 2 spread out along the outer rail, so he has a pillow for when he rolls over. He sleeps on his side to start with usually.
Nick always sleeps with the fan on high. He also has blackout curtains. I keep a towel across the top of the curtain to keep all the light out. There’s a spotlight in the driveway, where his room is. A tension rod and clothespin help keep the curtain snug.
My routine saying while closing the door is “nigh-night, I looove you, I’ll see you in the mooorning”. Sweet boy.