A Peek Into Our Mornings With Complex Medical Needs

Recently, we had a shift in nurses, and the one who filled all of our daytime hours went down to minimal part-time. I know this will be a constant occurrence in our lives. There will always be changes. It’s very, very awkward and sometimes difficult to get used to someone being in our home. We have the mild comfort of knowing they passed a background check and have some medical knowledge, but they are still a stranger, and we are forced to be professional in our own home, which is extremely difficult when I am beyond exhausted and have already answered far too many medical questions for the day.

During this shift in our nurses, we were without any daytime nursing help for the better part of two weeks. The way our home works is, I stay home and take care of keeping up the house, appointments and taking care of the kids. My husband works out of the home; he works second shift, evening hours. When he’s done, he comes home and helps me. Our work is never over. When we don’t have a night nurse, we don’t really sleep. We take shifts. If I had to estimate, I would say my husband and I sleep in the same bed three nights a week, and for only about four or five hours.

We have Jacob, who is almost 6. He uses a wheelchair. He has cerebral palsy and epilepsy. He is also dependent on a trach and a g/j-tube. He uses a ventilator when he sleeps for breathing support. And then we have Elsa. She’s 2. I think that explains enough. Have you ever met a 2-year-old?

Jacob uses a ventilator for bi-PAP support when he sleeps. This means he needs eyes on him all the time. When Jacob needs to be admitted to the hospital, he goes to the PICU (Pediatric Intensive Care Unit). When you think about it, that means we run an intensive care unit in our home every day.

So, I thought I would share how a typical morning goes at our house:

9 a.m. Jacob is alert and awake and does not need oxygen this morning, so I disconnect his vent from his trach tube and turn off the Trilogy ventilator. I replace the vent with an HME (Humidity and Moisture Exchanger). Our mouths and noses make humidity for us, trach tubes don’t do it on their own, so this protects Jacob’s lungs while giving him the humidity he needs.

10:00 a.m. Time for morning routines to begin. First, I collect the six medications he will be getting this morning. I also grab a large syringe to fill with water to flush his meds through his feeding tube. Six meds and 40mL of water is too much to put through his j-tube at once, I give three meds and 20mL of the water through the medication port on his feeding tube.

10:05 a.m. I slide his wrap vest under his back, make sure it’s snug and connect the tubing to his vest machine. I push the proper buttons, and the machine begins to shake Jacob. It shakes up his lungs for 10 minutes — this prevents anything from settling in his lungs. After this, I prepare a nebulizer treatment. I step to the other side of Jacob’s bed and connect the nebulizer cup to his ventilator tubing. I turn on the vent, heater pot, and nebulizer machine and reconnect it to Jacob’s trach.

After some time, we have perfected what we do and how we do it for Jacob. Strict routine has proven to be the best method. There are times when we wait to do certain things if he’s sleeping or we have an appointment. But, we always try our best to follow this process.

I should also note that each of us who care for Jacob have our own way of doing his routines. They are all very similar, but Dad might brush his teeth before doing trach cares, when Mom does it the other way. While keeping Jacob safe, we try to remember it’s OK to put love in everything… our home is not a hospital.

10:15 a.m. The vest has finished its cycle and so has the neb, so I slide the vest off and disconnect and turn off all the machines. Now it’s time for cough assist. The cough assist machine also connects to his trach. This machine simulates the dramatic inhale and exhale of a cough. You and I cough all day long and don’t realize it. We constantly use our lungs to capacity. Jacob’s low muscle tone doesn’t let him do that, so we do it for him. I turn on the machine, connect it to Jacob’s trach, and push “therapy.” It goes inhale, exhale, break, inhale, exhale, break; I count five cycles, then pause the machine and disconnect it from Jacob’s trach. We do this process twice on days he is well.

10:20 a.m. I give Jacob two puffs of his inhaler. We use a chamber, I puff it into the chamber, and he can use as many breaths as he needs to get the medicine out. Sometimes, he will suck in a big breath, but today I count a few before giving the second puff.

10:25 a.m. I give Jacob the other three meds and remaining water through his j-tube.

10:30 a.m. I set up a station with two Dixie cups, one with acetic acid (vinegar) and one with sterile water. I open cotton-tipped applicators and place four in each cup. I locate a 2×2 split gauze and a clean or new trach tie. I’m ready to do trach cares. I use one of Jake’s plush Ninja Turtles under his neck to rock his head back a little and remove the old gauze. I take the cotton-tipped applicators and clean, then rinse, around his trach. I use a gauze to dab the area dry, then tuck another neatly around his trach tube. I unfasten his current trach tie and replace it, one side at a time, very careful not to pull his trach out. I lift his shoulders and tuck him into my chest to free my hands and fasten the trach ties at the back of his neck. He always wiggles; he thinks it’s funny. We’ve been working on “hugs” this way. Sometimes, we have to adjust the ties a few times to get it just right.

10:40 a.m. I put some mildly minty mouthwash (say that three times fast!) into another Dixie cup. I take his toothbrush and tongue scraper and dip them into it and brush his teeth, then clean his tongue. He understands and opens his mouth to make it easier, unless he wants to be a stinker that day. He usually has his mouth open which makes the flora of his mouth very different from most. We have found this routine works really well for him if we do it twice every day.

10:45 a.m. Get dressed and ready for the day!

After this is a little clean up, the trach care station, putting the used syringes in their container to be washed and used again, washing his toothbrush and tongue scraper, etc. All in all, it takes about an hour.

This is when Jacob is well. When he is ill, this routine extends with more breathing treatments and nebulizers. And we do it all four times daily instead of two. Sick routines are nothing short of exhausting when we do it on our own.

This is our routine, Jacob’s unique morning practice that works perfectly, just for him. We do it at 10 because my husband and I have never been morning people. Jacob gets doses of meds seven times per day; sometimes there are many medications, sometimes just one or two.

When we don’t have a nurse, this is our responsibility, but, one of us needs to work. That responsibility falls on my husband, and this one usually falls on me. Not because it’s the traditional way to do things, but because it financially works best for us. Don’t get me wrong, he does it on his own quite often also. I always make sure to have my coffee in by meds time, because, don’t forget…. we also have a 2-year-old!

Editor’s note: This is based off an individual’s experience and should not be taken as medical advice. Please see a doctor before starting any type of medical routine.

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