Carolyn took Max for a long-scheduled visit to the apnea/pulmonary care clinic at Children's today; this is one of the many specialists that Max is seeing. For the most part, Max put on his usual charm offensive. However, Max has a disconcerting habit of crying if he sees another child crying. For a long time we thought he was just copying his older brother, but having seen him around other babies, Carolyn confirms that he seems to pick up their distress via baby telegraph. Needless to say, there are plenty of unhappy children at Children's.
The monitor to which we attach Max every night has been recording his breathing and heart patterns, as well as any alarms, time between the alarm and its reset, and other indicators of parental diligence. We initially viewed the monitor with suspicion because we knew it would eventually disgorge all of our secrets to the pulmonary care team, but then we forgot about it.
I'm happy to say that the pulmonary care team read the monitor's memory and gave us high marks for consistent use. They also told us that the few times the alarm went off were false positives: Max's heart or breathing patterns may have tripped the alarm, but they weren't real episodes of bradycardia, tachycardia or apnea. As a hospital baby, Max has always slept peacefully through any manner of noises, including his monitor's alarm. Had Carolyn and I been hooked up to monitors over the past couple of months, however, they would have told a different story. There's nothing quite like being catapulted out of Lethe's sweet embrace by a klaxon announcing that your child needs emergency care.
The pulmonary/apnea team tried to talk us out of continued use of the monitor. After all, they said, Max has gone 43 days at home without an incident. We, however, aren't so sanguine. Max hasn't had an episode..yet. I was surprised to hear that we had been home for 43 days. I don't know if it feels like just a single day or an eternity, but there's something nice and concrete about the number: 43 days.
Max is suffering from what Carolyn calls the "family cold." We've all got it to some degree or another. Dark theories abound regarding who among us brought in the infection. For political reasons, we've decided to blame the only member of the family who can't talk, although we don't have a theory where Max might have gotten it. To some extent, Max's cold symptoms made his lung function appear temporarily worse. Nonetheless, the pulmonary team doubled his dose of diuretic in order to keep his lungs clear of fluid. We go back in a month for a further checkup.
Showing posts with label monitor. Show all posts
Showing posts with label monitor. Show all posts
Tuesday, June 2, 2009
Saturday, May 2, 2009
The home hospital
Since Max came home Carolyn and I have been operating a small-scale low-intensity care facility from our home. We've become so proficient that we're thinking of running a special needs infant day care center as a way of supplementing our income.
All kidding aside, managing Max's care seemed absolutely overwhelming at first, and, although we've started to settle into a routine, it remains a lot of work. However, it's rewarding work: Max loves getting a sponge bath, for example. In addition, as we gain confidence, we're tweaking Max's care based on our own thinking of what he needs. Of course, our first tentative steps away from the care instructions we came home with resulted in Max losing weight--a big deal for recently released babies. But, seriously, who makes any progress in life without a few missteps? We're learning as we go along.
Because Max can only tolerate a tiny amount of food by mouth, we rely on a pump hooked up to his ng tube to deliver almost all of his calories. If he's going to get over his reflux, he's going to have to get big and strong. Here's a picture of the pump:
The big metal pole is just that: a big metal pole to hang stuff from. The pump is the small box about half-way up. It's an infinity orange model enteral feeding pump. Every morning we break out a new plastic food bag to hang from the metal pole. Max gets formula during the day and fortified breast milk at night. This model pump can handle both formula and the thinner breast milk. The pump has a battery pack that we charge at night and comes with a discreet backpack: we can be extremely mobile, a thrilling though somewhat disorienting prospect.
Max gets a variety of medications delivered through his feeding tube. We use regular syringes:
From the bottom to the top: a probiotic solution, erythromycin (an antibiotic with prokinetic properties) and sterile water to flush the drugs out of the feeding line and into his stomach. Max mainly gets drugs to help control his reflux, although he remains on a small dose of aldactazide (a brand-name combination of diuretics) left over from his lung problems in January. The idea is to let him "grow out" of the dose. The dosage of the other drugs will increase with his weight. Here's a picture of Carolyn delivering medicines (I love the expression on Max's face):
Over the course of the day, Max gets 19 separate doses of drugs, vitamins and so on. We find it easier to make a day's worth of medicines all at once and store them in baggies:
To keep all of this straight, Carolyn put together a daily schedule for Max with his feedings (attempts with the bottle, formula, breast milk etc) and drugs. In addition, we try to record notable events, although the definition of "notable" is becoming a little plastic. Here's a picture of a schedule, sitting next to a recipe for Max's formula:
(If you look closely you can see arithmetic in the margins--there's a great deal more long division than I would have thought.)
At night, we hook Max up to his monitor. Thankfully, he left his pulse-ox meter in the hospital, but we do still keep track of his breathing and heart rate. In my opinion, the monitor looks like a Soviet tape-deck, but we're told it's the latest thing in home health care:
The monitor is connected to two leads taped to Max's chest: one measuring his heart rate, and the other measuring his respiration rate. Which is which? You don't want to get them backwards, or the monitor will think that he's taking 170 breaths per minute, but his heart is only 40 beats per minute. There's a handy mnemonic we use: "white on right". Ah-ha, but whose right? (Max's). And who can tell their right from their left in the night? Here is a picture of Max's chest, showing the leads. The leads are sticky, but can't stand up to baby sweat, spit up, etc, so we've added extra tape to hold them in place:
Finally, we keep tabs on Max using a video camera we placed in his room. We had a sound-only pickup in Felix's room that we dubbed "Radio Free Felix". We haven't decided which cable news network the video system best resembles yet.
The monitor has a night-vision feature, showing a grainy black-and-white image in low light. Squinting at the tiny screen always reminds me footage of people watching the Apollo landings back in the 1970s.
All kidding aside, managing Max's care seemed absolutely overwhelming at first, and, although we've started to settle into a routine, it remains a lot of work. However, it's rewarding work: Max loves getting a sponge bath, for example. In addition, as we gain confidence, we're tweaking Max's care based on our own thinking of what he needs. Of course, our first tentative steps away from the care instructions we came home with resulted in Max losing weight--a big deal for recently released babies. But, seriously, who makes any progress in life without a few missteps? We're learning as we go along.
Because Max can only tolerate a tiny amount of food by mouth, we rely on a pump hooked up to his ng tube to deliver almost all of his calories. If he's going to get over his reflux, he's going to have to get big and strong. Here's a picture of the pump:
The big metal pole is just that: a big metal pole to hang stuff from. The pump is the small box about half-way up. It's an infinity orange model enteral feeding pump. Every morning we break out a new plastic food bag to hang from the metal pole. Max gets formula during the day and fortified breast milk at night. This model pump can handle both formula and the thinner breast milk. The pump has a battery pack that we charge at night and comes with a discreet backpack: we can be extremely mobile, a thrilling though somewhat disorienting prospect.
Max gets a variety of medications delivered through his feeding tube. We use regular syringes:
From the bottom to the top: a probiotic solution, erythromycin (an antibiotic with prokinetic properties) and sterile water to flush the drugs out of the feeding line and into his stomach. Max mainly gets drugs to help control his reflux, although he remains on a small dose of aldactazide (a brand-name combination of diuretics) left over from his lung problems in January. The idea is to let him "grow out" of the dose. The dosage of the other drugs will increase with his weight. Here's a picture of Carolyn delivering medicines (I love the expression on Max's face):
Over the course of the day, Max gets 19 separate doses of drugs, vitamins and so on. We find it easier to make a day's worth of medicines all at once and store them in baggies:
To keep all of this straight, Carolyn put together a daily schedule for Max with his feedings (attempts with the bottle, formula, breast milk etc) and drugs. In addition, we try to record notable events, although the definition of "notable" is becoming a little plastic. Here's a picture of a schedule, sitting next to a recipe for Max's formula:
(If you look closely you can see arithmetic in the margins--there's a great deal more long division than I would have thought.)
At night, we hook Max up to his monitor. Thankfully, he left his pulse-ox meter in the hospital, but we do still keep track of his breathing and heart rate. In my opinion, the monitor looks like a Soviet tape-deck, but we're told it's the latest thing in home health care:
The monitor is connected to two leads taped to Max's chest: one measuring his heart rate, and the other measuring his respiration rate. Which is which? You don't want to get them backwards, or the monitor will think that he's taking 170 breaths per minute, but his heart is only 40 beats per minute. There's a handy mnemonic we use: "white on right". Ah-ha, but whose right? (Max's). And who can tell their right from their left in the night? Here is a picture of Max's chest, showing the leads. The leads are sticky, but can't stand up to baby sweat, spit up, etc, so we've added extra tape to hold them in place:
Finally, we keep tabs on Max using a video camera we placed in his room. We had a sound-only pickup in Felix's room that we dubbed "Radio Free Felix". We haven't decided which cable news network the video system best resembles yet.
The monitor has a night-vision feature, showing a grainy black-and-white image in low light. Squinting at the tiny screen always reminds me footage of people watching the Apollo landings back in the 1970s.
Monday, April 20, 2009
Our night in the family apartment
Carolyn and I spent the night at one of the "family apartments" inside the HSC. These are fully functional apartments--kitchen pictured here--where families can practice giving all the care that the HSC patients will need inside a hospital, where help is just a shout away.
Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.
In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.
But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)
Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.
In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.
But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)
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