All summer, Gabriella had been coughing. She was often congested. And her respiratory complications raised alarms about aspiration.

It was the week before Labor Day, eight years ago. More than a decade had passed since those tumultuous early days of dehydration and surgeries and the malignant frozen section. Much of that time was calm, even if the monotony became disheartening. But be careful what you wish for…

My wife made the rounds among our daughter’s specialists, adding an allergist and a pulmonologist. We became concerned about asthma, which ran in my family. After a trip to the ER in March, we were giving her respiratory treatments at home with a nebulizer. This involved pulling a clear plastic mask over her mouth and nose, squeezing liquid Albuterol from narrow tubes into the apparatus, dispensing it in gas form.

These treatments became a daily ritual, which largely fell to Lisa. I had a long workday, and she was the medical professional. Plus, the new routine intimidated me. What did I know about dispensing medicine?

Only later did I realize how stressful it was for her. Years of education and training and experience as a practitioner don’t prepare a mother to treat her own child.

All of this made me feel a bit useless. At the beginning, it had all been so enormous. We had gone from having our first baby to discovering how unique were our challenges, from a crushing diagnosis to ten surgical procedures. I was there for all the hospitalizations and the meetings with the geneticist, and I attended appointments with the orthopedist and the brain surgeon. When the bank I worked for got sold in 1996 and I was laid off, I took the opportunity to spend six weeks caring for Gabriella while Lisa was having Alexander.

By 2010, life was different. I headed to the train station each morning at 5:30 and arrived home around 8 p.m. Most of the developments came during visits with the pediatric specialists. I was left with a dislocated anxiety.

The physicians involved were different, too, focused on digestion and breathing as opposed to eyes and bones. There was something more subtle about these complications, something more mysterious.

On the Tuesday before Labor Day, Lisa went for a consult with the new pulmonologist. She shared the x-ray of Gabriella’s lungs, which showed markings consistent with chronic inflammations, similar to asthma. The congestion and coughing increased her chance of aspirating, she confirmed. And she added a second medicine, Pulmicort, to the daily respiratory treatments, while prescribing chest PT to loosen the accumulating mucus. She even recommended a device that would administer this therapy by itself: the Vest.

Chest physical therapy consists of rapid hits with a cupped hand on the patient’s back and upper torso. During her hospitalization the previous March, Gabriella discovered how much she hated chest PT. Some combination of discomfort and insult over those repeated light body blows caused her to pout and cry. Even more, she had hated her experience with the Vest. Neither Lisa nor I relished inflicting such misery on our child, but as usual my wife got stuck with most of the burden. But we opted against reprising the Vest.

In the meantime, we explored whether her respiratory issues had a GI component. A few days after seeing the pulmonologist, Lisa took her to the gastroenterologist. She expressed hope that the lung treatments would prevent further infections and pneumonia, but warned that if they didn’t, she would seek a pH probe to test for reflux, one possible cause of aspiration.

Not long after, Gabriella missed school with a wet cough and a low-grade fever. The pulmonologist ordered more x-rays. We increased the frequency of her nebulizer treatments and her chest therapy. Later that week, she remained very congested with a thick sputum. On the third day, Lisa made the rounds of the specialists.

That evening, she briefed me on a most ominous morning. Gabriella looked pale and she weighed 55 pounds, down 7 in two months, unsurprising since she hardly ate. The GI was concerned. She prescribed an immediate suppository, with another that night. Within forty-eight hours, if our daughter hadn’t resumed eating, she would have to be admitted to the hospital and fed through an NG-tube. The gastro also raised the possibility, that she might need a permanent G-tube. We had discussed this previously, hoping to avoid it if at all possible.

The lung doctor added something else. While the x-ray of her chest was clearer than expected, the view of her abdomen showed an unexpected development. Gabriella had kidney stones.

Suddenly, all was spinning. I had a difficult time processing all of this information. It was likely at least some of these symptoms interacted with one another, but how was unclear. I had no ability to distinguish among different types of feeding tubes, but all of them brought a foreboding. And kidney stones? I didn’t know a lot about them, but I knew they were painful.

It pained us that Gabriella couldn’t tell us herself where she hurt. And we prepared ourselves for a new period of the unknown.

To be continued…

Last week, Gabriella went on a field trip with her adult program. The group has ventured out before, going to the movies (Black Panther!) and walking around the mall. This time, they spent several hours at Memorial Park in Neptune, enjoying the first summery day of the spring.

On weekday mornings, we load our daughter on the bus to her day program. We still refer to it as “school” even though she graduated in 2016, in part because the word conveys the magic of her eighteen years at Lakeview. She is always excited to go.

Enrolling her at Ladacin Network was an important step in her life. It was a big change for us as well, representing changes in experiences and routines. Gabriella goes with different nurses and she participates fully in the classroom. While her day program has less of an educational focus, they offer a range of activities including art, pet therapy, group PT and speech, and circle time. Every so often, they take a field trip.

This outing afforded the group time in the sun, complete with the sounds of summer. The park looks out onto Shark River, but it boasts a new boardwalk much like several of the Jersey Shore beaches. Unlike on our trips to Wildwood, Gabriella didn’t have access to her beach wheelchair, and they all remained on the boards rather than getting down into the sand and surf. Still, we’ll have opportunities to dampen her toes in the ocean in the coming months.

Gabriella had a great time, rarely complaining as they moved between sun and shade. Her nurse made sure she had enough sunscreen, while walking her around to keep her interested.

The trip allowed our daughter to share an afternoon with her peers. Just as with Lakeview, we (and especially Lisa) have gotten involved with the parents association at Ladacin. As an adult, Gabriella is establishing her place within a community of her own. She (and her nurses) are building their own relationships, independent of her family.

One of her program friends had a birthday on Wednesday. While Gabriella was unable to go to her group home and celebrate with her, she brought her a slice of cake with butter-cream flowers to commemorate the occasion.

Lisa and I still do almost everything with her. Next weekend, we will once again take her to the Lakeview prom, which welcomes alumni to celebrate alongside its students 15+ years old. I enjoy accompanying her, but it’s not lost on me that many other former graduates attend with nurses or aides. Even at age 23, I am hesitant to afford Gabriella that level of independence. But experiences like last week’s field trip continue to establish her as her own person, with her own community.

This is heartwarming for us, but it raises questions about the future. While I am determined that our daughter will always live with us, we know we can’t be certain. As she has her own experiences, as she establishes her own place in the community, she creates a new hope.

Every day, we use equipment to care for and transport Gabriella. These range from medical implements to her wheelchair and bath-chair to our minivan with its rear-entry ramp. Then nostalgia strikes, and I venture to our basement (and into the recesses of my mind) to find some of the unusual devices of her earlier years. Her corner-chair. Her prone stander. And the amazing Scalamobil.

I’ve never been mechanical and find myself intimidated by the need for adjustment and upkeep. But as with medical terminology and care routines, I’ve learned enough to get by, and then I depend on Lisa’s greater facility.

Early on we obtained her Panda stroller, the subject of a drawn-out battle with our insurance company. Like much of her equipment, the Panda served both our daughter’s needs and our own. A buggy transferable between indoor and outdoor bases reduced the mud her baby stroller tracked inside and simplified getting her around when we left home. It also helped us all transition, both physically and emotionally, to a time when she would need a full-size wheelchair.

Gabriella was born with low muscle tone, lacking the strength or agility to crawl on her own. It thus became vital to stretch her and position her on the floor. For this purpose, we got her the Tadpole tumble forms positioning equipment. Each piece contained foam covered in a colorful smooth plastic shell in a different shape. We’d use a blue wedge to support knees with contractures that impeded bending, or a red triangle along her side to keep her balanced while lying on her belly.

Some devices came as a result of surgeries. I’ve written about her comic adventures with tiny eyeglasses and contact lenses following her cataracts surgeries. She wore a soft foam-filled cap after they excised the tumor from her skull. Both encouraged us, representing part of her healing process.

Sometimes, insurance covered the expense, but more often we needed to make the investment ourselves. And then there were the gifts of ingenuity. Lisa’s sister Joanne built Gabriella a marvelous corner-chair that we strapped her into with Velcro; this provided our daughter with comfort and support for several years (see this week’s image). On a smaller scale, an aide at Lakeview School customized a spoon with a smooth curved handle that Gabriella held to feed herself. The love that went into crafting these solutions brought us appreciation and joy.

Other equipment strengthened her bones and muscles. Her physical therapists at school used a prone stander, as large as a piece of furniture. They would angle Gabriella forward on her chest and belly and thighs, secured in several places. This device promoted weight-bearing and gave her a sensation much like being upright. They also introduced us to adapted tricycles. Because she’s a kid who is happiest when she’s in motion, riding was an exciting sensation for her.

To bolster this strengthening outside of school, we got a stander and an adapted tricycle for home. We used each with some trepidation, and soon decided to focus her strength-building at Lakeview, under the oversight of trained therapists. Then Gabriella’s scoliosis worsened and we had to stop using either device even there.

Of all her equipment, the most remarkable was the Scalamobil. Advertised as a stair-climber, the Scalamobil replicated the motion of ascending or descending steps.

We live in a center-hall Colonial, with the bedrooms on the upper floor and the living space on the lower. When she was younger, Gabriella weighed so little that carrying her to and from her room required little thinking. Her weight remained in the bottom 10% for her age, but as she approached fifty pounds transporting her up and down became more difficult.

When the vendor unboxed the Scalamobil and demonstrated it on our staircase, five steps to the landing, then eight more upstairs, we were filled with wonder. The device had three wheels on each side, large on the inside, small in the middle, and a third on the exterior. When backed against the lowest stair, they moved like gears to gain a foothold on the step above, then gyrated to lift the chair. Coming downstairs, they reversed direction, with one securing the next step before descending.

Once convinced it was safe, we lifted Gabriella into the seat. The Scalamobil had a lap-belt and a harness strapped across her chest, and a foot-stool fitted to its base. At first, she looked frightened at the whirring and rising, but soon it was part of our daily routine, more important as she gained weight.

Gabriella has introduced me to a world of equipment I would never have known otherwise. Home-made and custom-built, simple and miraculous, these devices each proved essential to our daughter’s development.

In twenty-three years, we have experienced moments of joy and of relief. Likewise, we’ve known the terror that accompanied the dehydration and surgeries and the tumor on her skull. But sometimes there’s a quieter fear, a dread like a prickle on the scalp, often signaled by a beep in the night…

This past Thursday, Gabriella had been crabby. Nothing we did soothed her for long, and we were glad to get her into bed in the evening. When we attached her pulse oximeter to her toe, however, her heart rate was elevated. Then she had a seizure.

Gabriella has been experiencing seizures for years, but this one drove her heart rate to the highest level I can ever remember, nearly 170 (although not all of them come at night when we have the pulse oximeter attached). When she came out of it, Lisa took her temperature: no fever. But the pulse ox continued to beep, bringing that worry I’ve often known.

I have an ambivalent relationship with that device, with its white plastic wire and its digital display. It brings back awful memories of sleeping in hospital rooms during prolonged stays.

Even today, we use a baby monitor to track our daughter’s progress through the night. We hear the pulse ox beep when her oxygen dips below 90%, or when her heart rate exceeds 125 or goes under 50, which thankfully, is seldom. The sound it makes when alerted is insidious…beep-be-beep beep beep, beep-be-beep beep beep.

During the early years, it was unnerving to wake up to that clarion. I’d leap out of bed, hurry downstairs, wondering if my pulse was going as fast as hers. Upon reaching her room, the first thing I would do was to push the button to suppress the sound for the next two minutes. Sometimes the beeping was alerting us to something of concern. Just as frequently, it seemed, the small ring around her toe (it looks like an old-fashioned Band-Aid) has come loose or the connection skipped a beat. And when she sleeps, Gabriella’s heart rate often goes below 50. As a result, several times a week, I reset the lower limit to 45 to restore silence.

It can be easy to become complacent, and more so when you want it to be a mechanical failure or an excess of calm. But sometimes, it’s not so.

On Friday morning, her skin became warm. With her fever, she grew lethargic. We attached the pulse ox during the day, which was unusual, and found her heart rate peaking at over 150. The nurse listened to her lungs and said she thought they sounded junky. But if she was congested, why was her oxygen level so strong?

Lisa consulted Gabriella’s doctor and got a prescription for an antibiotic, plus we gave her Tylenol. I sat alongside the pulse oximeter, poking my thumb at the button every time it sounded, trying to get it before the first beep bloomed into that horrid sequence.

We alternated being on-call for two-hour increments. That night was stable, but I awoke at 7 a.m. to the beep-be-beep beep beep-ing. My first thought was that her heart rate had fallen once more under 50. But when I pressed my thumb to silence the pulse ox, I found that her oxygen level had dropped to 89, then 88. Most mornings, the beeping is enough to wake her, but she slept on. Her forehead was warm again, so I put a Tylenol caplet in a syringe with water to dilute it for delivery through her G-tube.

I waited in the shadows, leaning over to push the button every two minutes. The numbers became depressed: 86, 85, 83, 80, and down into the 70s. This was during my shift and I wanted to let Lisa catch up on rest, so I tried rewrapping the toe-ring and got immediate gratification, with the oxygen level soaring to 94. But it soon slipped back into the 80s and then to 75. I flipped her to her other side, but that didn’t help either.

I wondered if I would need to haul out the oxygen concentrator, a rolling piece of equipment that has always intimidated me, and not least because its use often heralds a trip to the hospital. But with first light, things normalized.

As the day progressed, we held our breath and wondered. Whether the fever would persist. Whether she would suffer more seizures. And whether more beeping in the night would bring another round of dread.

Saturday was much like Friday. In no particular order, Gabriella spiked a fever, we administered Tylenol and the antibiotic, she cooled down, she got an extra breathing treatment, her heart rate normalized. By bedtime, she seemed better.

Again, we traded off that night. When I woke for my shift, I heard a great rumbling. Gabriella’s oxygen had fallen and, after trying chest PT and flipping her from side to side, Lisa had set up the O² concentrator. The growling-wheezing sound brought a new round of anxiety, but even that didn’t drown out the beeping.

Sunday was a lot like the prior two days. With three doses of the antibiotic down, Gabriella seemed to be better by bedtime, then things slipped again. This time we didn’t hesitate long before setting up the concentrator, facing another night of lousy, interrupted sleep. By Monday morning, she was cheerful, trying to encourage us despite a low-grade fever.

Once more the day held new promise. And yet I know that when darkness falls, I will feel that familiar dread, my subconscious mind alert. Awaiting those things that go beep in the night.

Saturday mornings are special for me.

Sometimes my alarm goes off first, sometimes I hear Gabriella’s plaintive urgings through the monitor and shut my phone off before it rings, but either way they always coincide. It doesn’t matter that I’ve got the ring turned to the lowest setting. Her ears are attuned to the slightest sign of wakefulness in the house.

I’m a morning person, and I look forward to getting her ready, so I rise with ease. Not to mention that it’s often between 7 and 8, later than our Monday-to-Thursday wake-up at 6:30 to let the nurse in to prepare her for the day program.

I covered Saturday mornings long before I retired last year. It seemed the least I could do, with Lisa handling weekdays while I was at work. That gave her a free start to do whatever she wanted every week. Now my wife does the same for me on Fridays, allowing me to begin writing as soon as I’m up.

It’s all about teamwork.

On Saturday, I’m downstairs in five minutes and Gabriella is thrilled to see me. (She, too, is a morning person.) I lay the groundwork on Friday nights, reminding her that I’ll be with her tomorrow, and she always seems pleased. It’s rarely so early that her nighttime formula feeding is still running, so I start by shutting off the pump. I give her Prevacid, her daily intake to control her reflux, then remove her G-tube from the port in her belly.

Then I brew myself a pot of coffee.

Our mornings together have a certain rhythm dictated by hygiene and medical requirements, but we find variety around the edges. Some weeks I need to replace the pads that swathe her below and above (a liter of formula and water is a lot to take in overnight). Sometimes (like this past Saturday), I change her and leave her in the bed watching a video on her tablet until she gets restless. At other times, I get started right away.

I clean her up (although it’s usually the nurses at night that give her bed-baths) and dress her. On some Saturdays I present her a pair of shirts and let her choose her own. This week, she picked a pink top with an animated whale. She was pleased with her selection.

This Saturday was extra early, so I chose not to play music. Years ago, I would cycle through a variety of stations, but now salsa is her favorite.

Once she is ready, I transfer her to her wheelchair. I Velcro a back-brace around my waist to ease the burden. I know I’ll have to get used to the Hoyer lift, employing it seldom enough that I’m leery of running it by myself, and I try not to bother Lisa with anything on Saturday mornings.

Then comes the Nebulizer. Once I add the liquid drug and fit the clear plastic mask from the bridge of her nose to her chin, we begin the first breathing treatment. Often she inhales the mist without a struggle, but this week she tugged at the apparatus with her right hand. (It is convenient that she is less able to direct her left to obstruct the procedure, but it saddens me to think so.) Once I loosen her grasp, I calm her with a rendition of Little Peanutgirl, ending by making a wide ring with her hands from above her head to the side of her chair. By the time I reach the third of four verses, she has stopped fighting and usually lets me squeeze in the next medicine and start the second treatment.

After treatments, I retrieve her electric toothbrush. Brushing, too, requires a song, an irony because my daughter is the only one willing to listen to my voice.

After I wash her face, we move on to her medicines, so I put the extension back into her G-tube port. At this time of day, she gets three meds, to prevent seizures and promote hydration, plus a fourth syringe with water.

By now, she’s hungry. Breakfast used to be baby cereal (we even tried a mushy British concoction called Weetabix for a while, but she didn’t care for that), but now we combine creamy yogurt and applesauce, sprinkled with oatmeal. I never have a problem getting her to finish the full helping.

Our routine totals between 45 minutes and an hour … if I don’t have her watch a video in bed. (I work slower than the nurses during the week.) After breakfast she’ll enjoy Sesame Street episodes we’ve recorded on the DVR, and I’ll sit at the peninsula at her side. Gabriella loves companionship.

When she first qualified for nursing services, Lisa and I laid out the schedule. My one request was to hold off on Saturdays until noon, leaving the mornings to me. I cherish these times with my daughter.