I don’t really know what to say about the last week and a half since Jack has come home. It’s a level of complexity that I still feel completely unprepared to deal with. Perhaps the best thing to do would be to describe a single day this week.
Wake up at 5:30a.m. Quickly shower. Get Sam up, make his breakfast, pack his daycare bag. Let him play on the floor while getting the report on Jack from the night nurse. John gets up and begins to put Jack’s “go-bag” together for the day. The go-bag is a large yellow and black backpack. We put a self-inflating bag in there (in case he needs help breathing), suction catheters, gloves, spare HMEs, a spare G-tube and extension, syringes and water for flushing the G-tube and the portable suction machine, napkins, a nasal aspirator, hand sanitizer, sterile water, plus the basics: diapers, binkies, blankies, toys and spare clothes. We make sure that the portable suction machine is charged and set to the correct vacume pressure. We check the charge of Jack’s monitor, the Pulse-ox, and make sure we have a spare sensor, in case of an equipment failure. We go through the emergency trach change bag to make sure that no one has moved any of the vital items we would need in the event of an emergency.
If it’s a long day at CORP, Jack will need to get his meds. We draw the meds and pack them in a cooler bag, since some must stay refrigerated. We prepare the proper amount of formula in a feeding bag, pack the feeding bag and the feeding pump into a small travel backpack. If John is home, as he was this week, he sets alarms on his phone to help us remember when a feed or a med is due.
Finally, we check our oxygen supply. Is the travel tank full? Has it been properly bled and stored? Do we have the key for opening the tank readily accessible?
One of us feeds, dresses, and cleans up Sam. The other helps the nurse to do the same with Jack. This week, it was my job to bring Sam to daycare. John stayed with the nurse in order to change the dressings on Jack’s trach.
The ambulance arrives, and Jack’s car seat is loaded onto a stretcher. Whichever parent is with Jack works with the day nurse to account for each piece of equipment. When we arrive at Nemours, we place Jack’s car seat into a hospital-provided red plastic wagon, and try to stuff as much equipment into the crevices as the wagon will hold. Thus loaded down with monitors, feeding pumps, oxygen tanks, giant backpacks and suction machines, we haul ourselves to and from Jack’s therapy sessions, and try to convince him to rest and nap during the breaks in between. A day at CORP can be as short as about 4 hours, or as long as 9, depending upon the day.
When the ambulance drops us off back home, the nurse leaves for the day and then it is a wild sprint to the finish. If my mom is around, she generally takes care of keeping Sam occupied and getting his supper ready. While Mom was been gone, we relied upon a steady stream of friends to help us pick up Sam at day care or just help us to wrangle him and keep him safe (he is fond of pulling chairs on top of himself, or trying to scale large things such as refrigerators.) John and both work to get Jack bathed, suctioned as needed, and to administer the laundry list of evening medications as well as his nightly feed. Sam gets a bath and is put to bed (usually with wild protests), and Jack is put on his vent and put to bed.
John prepares the formula for the night, and I prepare Sam’s bottles, lunch, and diaper bag for the next day at daycare. I wash the syringes and the G-tube extensions. We then work on logistics for the following day while folding laundry, doing dishes and still doing all the things that responsible adults are supposed to remember to do.
One of us stays up monitoring Jack until the 11p.m. night shift nurse rolls in. We give her a report on Jack, and stumble off to bed.
When you add juggling our work schedules, grocery shopping, figuring out transportation for Sam, paying our bills, calling ahead for ambulances, securing authorizations for Jack’s care from Medicaid, facilitating communication between the two nursing companies now working on Jack’s case, and factoring in all of Jack’s many medical appointments… you can see why I say that our lives have become complex! (You can also understand why, when a nursing manager suggested I go have a spa day, I laughed in her face…)
Yet, it’s worth it.
Jack is having a blast at home. He played in a sandbox for the time over the weekend. He sat in the grass on Memorial Day and looked up, amazed, at the sky. He played ball (sort of) with his brother, rolling it back and forth. He sees the people who love him most every day. He even gets to see his hospital friends frequently at CORP. He’s happier, more motivated to move and crawl than ever, and we’re happier, too.
Today, I toured the medical day care center, Nurses N Kids, in New Castle. Jack will be enrolled starting June 16th. Nurses N Kids provides transportation, so no more frantic calls to the ambulance company. I don’t know if our lives will get easier, but a lot of running around, and a lot of logistics will be cut out of the equation, and for that I am grateful.
Again, who knows what life will be like in a month, or in ten years for that matter…. but as I have said, there is only one road. Jack’s road. And we will follow it.