I’d like to write about an aspect of our life that I have not written much about since Jack was in CORP over a year ago: what it takes to keep the household going while keeping Jack in the rich environments that he so desperately needs to thrive mentally, physically, and emotionally.
We could not keep ourselves going without the help of a large staff of nurses and case coordinators from our home nursing company, Bayada. Nurses come to the house each night so that John and I can sleep. They monitor Jack and his ventilator throughout the night, silencing alarms so that we can rest, and addressing his needs. Some help us to keep our syringes and trachs sterilized, our equipment organized, and our meds up-to-date- things we usually do ourselves. We used to have nursing on Saturdays and Sundays during the day. Now, due to recent changes in Medicaid coverage, we have a single Sunday day shift per week. This lets us take our eyes off of Jack long enough for John and I to get all the errands of the week under control. It also facilitates our ability to get Jack out of the house on fun trips and outings. Bayada nurses also take Jack to school at the Delaware School for the Deaf.
Nursing is absolutely essential to our lives and it dictates the ebb and flow of our days. We turn in when the nurse arrives, and we must wake when the nurse’s shift is over. When we experience call-outs and lack of coverage–which happens at least a few times per month– we are up all night and can barely function at work. Nursing makes our life possible. It’s also one of the tougher things to get used to.
When we learned that Jack would have a trach and a g-tube, we never guessed that his transportation needs would be the most fraught aspect of our new life. A certified caregiver must remain at Jack’s side when he is transported, ready to switch out a trach or provide emergency care, getting Jack to and from daycare, to and from school, and to and from his numerous doctor’s appointments.
Here’s what has to happen in order for Jack to go to daycare: An ambulance picks a nurse up from Nurses N Kids at 6:30a.m. and travels to our house. We give report, load Jack and his gear up, and Jack travels to NNK for the day. Last fall, we found ourselves caught in the middle of a contractual disagreement between Nurses N Kids and the transportation company that they contract with. The transportation company stopped sending a separate van to pick up Jack each morning. We missed work due to late arrival times and early return trips home. Jack was en route for well over an hour (which he does not tolerate well- he grows congested and has trouble keeping his O2 levels up). With a friend-of-a-friend’s help, we were able to appeal to the state Medicaid office to secure a separate contract for Jack that resulted in our current, ambulance-every-day arrangement. Without reliable daily transportation for Jack, we would not be able to work full time.
When Jack’s needs grow, so too does complexity. After a great experience with Delaware School for the Deaf last Spring, we secured funding for additional nursing coverage this summer to allow Jack to attend school 3 days a week. Here’s what has to happen to transport Jack to school:
- A Nurses N Kids nurse must arrive early to meet the ambulance
- Ambulance goes to Nurses N Kids and retrieves an NNK nurse for the route
- Jack is picked up at our house
- Ambulance arrives back at NNK, the NNK nurse signs Jack over to a Bayada nurse, who draws his morning meds and boards the school bus to DSD with Jack.
- The school bus takes Jack to school and back to NNK at the end of the school day at noon, where Jack is signed over to the NNK staff once again
In July, we had secured a letter of medical necessity and made the insurance request for extra nursing hours to make his additional school day possible. What we did not account for, however, was that the school district would shift his school bus pickup times to 7:20…. our whole arrangement fell apart. It took a week of phone calls to try (to no avail) to get a later bus pickup time for Jack, to shift our Bayada nurse’s schedule, ask NNK to send a nurse in by 6:00a.m. (and many of these nurses have significant commutes to work!) to register the change with the statewide agency that controls medical transportation, LogistiCare, as well as with our ambulance company, while figuring out lesser logistics such as how Jack’s meds will be administered with so little time for the trade-off between NNK nurses and Bayada. Jack had his first week of school this week and sure enough… the zero margin of error that we are dealing with meant that when the ambulance was ten minutes late to NNK, Jack missed the bus. It’s a mess and I’m not sure how we’ll work it out.
Meds and Equipment
John and I have established a division of labor in which he inventories and orders our medical equipment supplies, and I calendar for and keep track of the 7 medications that Jack requires. Some of the meds are compounded, meaning extra time must be allowed for refills. Some must be refrigerated. Some last only ten days before expiring and must be mixed at home. Some, like the new anti-seizure med, must be given at the same time to avoid the possibility of breakthrough seizures. And one medication, Tobramycin, an inhaled antibiotic that Jack periodically needs to fight lung infections, could cost us over $10,000 per refill unless we tread very, very carefully with insurance. I can’t begin to tell you here just how many phone calls have been made due to that one medication.
Because of safety regulations, Bayada and NNK nurses can’t administer pre-drawn medications, so I can’t just send Jack off with single doses ready to go. This means we must make sure we have school bottles that are tracked and stored properly.
John checks the equipment such as our oxygen canisters, disposables such as Jack’s HMEs and suction catheters, schedules deliveries, and has worked out storage systems for all the supplies that work for us and for our nurses. He watches the nurses’ notes meticulously for any supplies that must be sent in to daycare. He also schedules the periodic visits from respiratory therapists who must check the functioning of Jack’s ventilators (he has two- one that travels with him everywhere he goes, and another that stays at the bedside).
Let me tell you, when you have to look at the clock and calculate how long it is until the next med, how flexible the timing is on that med, whether you need to pre-pack food and a food pump, whether Jack might fall asleep and require a ventilator, it makes it mighty hard to take a spontaneous drive, a trip to the park, or anything else even slightly spontaneous.
What it all means
I think you get the picture. Even during the healthy, simple times, there’s a lot going on, and many balls in the air. I was motivated to write this post NOT because I am fed up or angry or looking to vent (though I certainly get that way sometimes) but because we try very hard to stay positive– and I think that leads me to write in a way that doesn’t always give the appropriate nod to the costs of Jack’s progress.
Folks who know us are often shocked to learn that we have nurses in our home every day, having thought that this was something needed just in the acute period, when Jack was first brought home. “When will all that end?” we often hear.
The answer to that question, of course, is not up to any of us to answer. In a pulmonary visit last week, Dr. Chidekel was measured, logical and mostly optimistic. As we move into respiratory season once again, our main goal must be to stay the course and keep Jack healthy. Once next spring rolls around, when Jack turns 3 and is all the stronger (God willing) we can start talking about possibilities for weaning the vent support down. Now, however, Jack needs the boost of good, vent-supported rest to keep his mind and body strong. As long as Jack needs the vent, he will need the trach to facilitate its use. Signs that he is growing stronger are good- he now tolerates and uncuffed trach most of the day and wears his speaking valve for 2-5 hour sprints.
But what about the swallowing?
Jack’s eStim sessions have not changed the fact that he is aspirating- we can see food come out of his trach– we know he is not swallowing. Because he yearns to eat food with us at meals, we have begun to explain to him and to Sam that we love Jack but can’t give him food because it is dangerous to him. We explain that it is because he cannot swallow, and that maybe someday, (maybe) if he works very hard with his therapists, maybe he can learn. It’s hard to tell a two-year-old who is crying with the deep, sincere tears of one who knows perfectly well that it’s not fair that no, it isn’t fair but it is just the way it is. Dr. Chidekel seems to put his hope in Jack’s mind- that Jack is smart, motivated, and willful, and that this combination may help him to overcome the swallowing difficulty in time.
I cannot say that I understand how this will ever happen– swallowing is something that you can do consciously, of course, but it must also happen unconsciously. And I cannot say that i understand how a child that cannot swallow will ever be free of a trach. And as long as Jack has a trach, all the logistics that I have outlined today will remain, as far as I am able to see. But we are a hopeful bunch.