12:00 am – I wake up to the sound of my son trying to get comfortable. It’s been an hour since I went to bed and I know that I just had the best sleep that I will have tonight. The trach prevents him from being able to make sounds, so his cries are silent. For this reason, as soon as he moves, I have to do a visual check to see if he is crying or merely getting comfortable. While I am awake, I untangle his feeding tube, sat probe and CPAP tubing.
12:30 am – I just started to doze off when I was brought out of sleep by the CPAP alarm. The tube came disconnected. I feel around for the ends of the tubing and re-connect them.
1:00 am – I am woken by the familiar sound of beep beep beep beep . . . the feeding pump is alarming. I see the message telling me that there is a flow error. I check the length of tubing for a kink or blockage. Nothing. I rotate the chamber – maybe some milk has splashed and is throwing the machine off.
1:05 am – beep beep beep beep. Apparently I didn’t fix the problem with the feeding pump. I try rotating the chamber again and double check for kinks, blockages and make sure all the clamps are open.
1:10 am – beep beep beep beep. There is obviously a problem with the pump kit. I stop the pump and go to the supply room for a new pump kit (it doesn’t occur to me anymore that having a supply room is unusual). I prime the new pump kit and make sure that the pump is running smoothly. Perfect. Now I can sleep.
1:50 am – Another beep beep beep beep. This time it’s the sat monitor. Matthew’s oxygen saturation level (sats) is dropping. I keep an eye on the numbers to see if he will recover without any help. He does. I doze off . . . for seconds. His sats drop again. Then again. Then they stay fine.
2:20 am – Matthew is rolling around. I do a visual check to see if he’s crying. He is. I comfort him and he goes back to sleep. I go to the kitchen and warm up the formula that I have to add to his feeding pump.
2:40 am – beep beep beep beep. Sat monitor again. The sat probe has fallen off. It’s a good thing anyway because I forgot to switch it to the other foot after 4 hours. I secure the sat probe to his foot and try to fall back asleep. I can’t. My mind wanders over how I will make it through much more of this sleep deprived world I am in. I have no time for my health, my marriage. I look at Matthew. I feel love so deep that I can’t believe it’s possible. I know I will make it through whatever comes our way. I start to feel sleepy as I listen to the not-so-quiet hum of the oxygen concentrator and CPAP machine.
3:30 am – Matthew is rolling around. Visual check. He’s fine. Untangle his tubes and wires.
3:45 am – Matthew is still trying to get comfortable.
4:15 am – I wake up and realize I have been asleep for almost a half an hour and I feel totally rested. This is not normal.
5:00 am – beep beep beep beep. Matthew’s sats have drifted. I go to the supply room and turn up his oxygen. I return to his room and watch the sat monitor to see if I have turned it up enough. After a few minutes I turn it up some more. His sats settle on a decent number and I can go back to sleep.
5:30 am – Matthew is rolling around. I do a visual check. He’s fine. I get into the most comfortable position in bed and think I could sleep forever like this.
6:00 am – Matthew is starting to wake up for the day. I manage to keep him somewhat half asleep for the next hour by rubbing his head and giving him his blanky and soother.
7:00 am – Time for the household to get going. My husband and I each take turns getting ready while the other gives Matthew his nebulizer treatment and gets him changed.
8:00 am – I have to be out the door in a half an hour for an appointment with the Paediatric Rehabilitation Team. Before we leave, I have to rinse out his feeding pump kit, clean his feeding extension set, get the portable oxygen and make sure his duffel bag is packed with all the supplies we need for a trip – emergency kit, spare clothes, suction machine, catheters, gloves, . . . the list is a mile long. I throw some toast in while I rinse out his feeding pump kit. When I turn off the water to the sink, I realize that he’s been coughing but I didn’t hear him. When he coughs, he fills his trach with . . . well snot . . . and unless he’s suctioned immediately it blocks his airway, suffocating him and making him throw up. And that’s exactly what happened. I change his clothes. He’s beside himself. I want to cry too. We act silly and get smiling again.
8:15 am – I have to get a move on. I get his bag packed. Then it’s time for a quick stop to the bathroom. I just get seated and he starts to cough. I jump up and run downstairs and suction him. I go back upstairs to try again. All I need is a few seconds. OK, a minute. I am not quite finished and he’s coughing again. I am reminded that bathroom breaks are a luxury that waits until he’s napping.
8:30 am – I eat toast while I hook him up to the portable oxygen tank and suction as needed. I get his coat and shoes on. He throws up. I don’t have time to change him again. I wipe him down as best I can. I get my coat and shoes on. I throw the 10 lb duffel bag over my shoulder. I throw the 10 lb oxygen tank over that, and my purse over that. I pick him up with the other arm. His shoe falls off. I set down the purse, tank, bag and we sit down and put the shoe back on.
8:45 am – We’re buckled in and ready to go. We get to the Peads Team appointment without having to pull over for suctioning. I am thankful.
9:00 am – I search for a spot to park. I desperately want to use a handicap parking spot but I search for something not too far way. I park the car and get Matthew out of the truck. I carry him, the duffel bag and the oxygen tank across the parking lot. We get settled into the waiting room. He excitedly plays with the little girl in the waiting room. The little girl wants to know what his trach and oxygen is. She looks scared when I have to suction Matthew. It takes her no time at all to adjust, though. Kids are so much more open than adults.
10:00 am – We’re done at the appointment. I’m given some exercises and suggestions for Matthew. I only had to suction 3 times and no puking! We head home.
10:15 am – I get Matthew in the door and hook him back up to the oxygen concentrator.
10:30 am – Matthew is “walking” with the aid of a push toy. He’s so proud of himself and I am so proud of him! He’s come a long way. It’s hard to believe that we were told at least a half dozen times when he was a baby that he was dying.
10:45 am – Matthew falls down and hurts himself. He’s crying . . . happen to see it, but can’t hear it. I scoop him up and quickly comfort him. I want to really comfort him, cuddle him, do the mommy thing, but my priority is to clear his airway. When he cries, he makes lots of snot. That fills his trach. Only after I have suctioned it all can I take him in my arms. By then he’s over it already.
11:00 am – Matthew is acting like he’s ready for a nap. I take him up to his room with him in one arm and the duffel bag over the other shoulder. I have to be careful as I walk up the stairs not to trip over the oxygen tubing that is wrapped around my ankles. I lay down with him and sing to him, interrupted only a couple of times to suction. We cuddle until he falls asleep in my arms. I am so tired, but before I can nap with him I have to hook him up to the sat monitor, prime the feeding kit with formula, and program the pump to feed him while we sleep.
11:30 am – I fill and program the pump, adjust his oxygen, and decide that instead of sleeping I will catch up on emails and phone calls. I have to keep up with my friends, although they are few now. My lifestyle scares most people.
12:00 pm – I’m ready for lunch. Matthew will wake any time now. I wish I’d slept. I am so tired.
1:30 pm – The baby monitor lets me know that Matthew is rolling around. I go up to his room and he’s waking up. As soon as he sees me he gives a huge smile. I could not love this kid any more than I do.
1:45 pm – As Matthew plays with some toys, I get his formula ready. Feeding time is a stressful time. Matthew has severe reflux. I wonder how many times he’ll throw up this feed. He’s not gaining weight like he should and the nutritionist wants me to feed him more. What she doesn’t realize is that more food just equals more puking. I stick to less food with less puking.
2:00 pm – I’ve just given the first ounce of formula. To give it I have to chase him around with his feeding tube attached to him like a leash. I run behind him as he runs with his push toy and I push formula slowly through his feeding tube with a syringe. We both trip on the oxygen tube several times. The tube gets tangled around the wheels of the toy and Matthew gets angry. I untangle us. Matthew starts to cough. I suction. No puking. Phew!! Just as I think we’re safe, he coughs again. This time we’re not as lucky. He pukes. Then he takes off. I chase him with the suction catheter still in hand. His feeding tube is dragging behind him. I sleeve the catheter and grab a spit cloth and clean him, the floor, the toy. I throw the spit cloth in the laundry pile. We average 2 loads of laundry per day.
2:30 pm – We both desperately need to get out of the house. I top up the duffel bag adding two sets of spare clothes, lots of spit cloths, formula, the feeding tube, some syringes. I get him and me dressed without incident. We get buckled into the truck and leave for the park. About 5 minutes into the drive Matthew starts to cough. I have to pull over immediately to suction. I have learned to pull over in some mighty tight spots.
3:00 pm – I push Matthew in the stroller, stopping every now and again to give him a bit more formula through his feeding tube or to suction his trach. Matthew throws up once, requiring a clothing change, but otherwise the outing is wonderful and we enjoy it tremendously. If only people would stop staring. Must they be so rude? Just as I am about to give up on mankind, a child approaches us and talks to me a mile a minute. The mother approaches and comments on how cute Matthew is. The mother doesn’t know how much her genuine smile just warmed my heart.
4:30 pm – We head home. My husband will be home from work soon. YAY!!! Matthew and I play and read until Bob gets home. Bob plays with Matthew while I make supper.
6:00 pm – Bob and I eat supper at the coffee table, taking turns to suction Matthew as needed during our meal. We are supposed to be eating at the kitchen table and doing feeding exercises with Matthew. In a perfect world, we’d have all the energy in the world for that. But this is not a perfect world. We eat quickly and then Bob gives Matthew a bath while I wash dishes, syringes and the suction machine. Bob does Matthew’s trach care and button care and gives him a nebulizer treatment.
7:30 pm – We spend the evening feeding Matthew, changing his pyjamas a couple of times after a spit, and playing and reading.
9:00 pm – I lay down with Matthew to get him to sleep while Bob gets the feeding pump kit primed and meds drawn up. After Matthew falls asleep, I hook him to the sat monitor. We hook him up to the feeding pump and program it to feed him overnight. We do a quick pick up of toys and fold laundry. I check our daytimer. Tomorrow is our monthly appointment with the pediatrician. It’s also trach change day. My husband and I change Matthew’s trach once per month. We change his feeding button every few months (unless it pops out by accident…which it does). I check the supply room for a trach. We’re low. The supply company has them on back order. They’ve been on backorder for a long time now…time to put in another call. A spare button is on back order too. Hope that doesn’t break before we get a new one. I do a quick check of supplies and make a note of what to order tomorrow. We kick our feet up and relax for about 7 minutes and then one of us heads to our bedroom and the other heads to Matthew’s bedroom where we will sleep for the night and tend to Matthew, the monitors and the pump. We take turns sleeping in Matthew’s room. We have not slept in the same bed in almost a year.