Out to lunch

Zachary was out to lunch this week, literally. 

He went out to eat at a restaurant near our house, the first such public trip.  He seemed to have a good time, though unsurprisingly he didn't eat, not that we expected him to.  He mostly watched cars pass by on the street.  And he walked back and forth on the sidewalk in front of the restaurant, with our assistance of course!

He's not so much interested in scooting anymore. He's all about being up and mobile. He's cruising while holding onto furniture . . .

. . . and insisting that we help him practice his walking skills, which is back-breaking work since we have to bend down so far to hold his hands. 

His physical therapist thinks he may go straight from scooting to walking without crawling at all.  Doesn't really matter much to us, we're just happy he's so happy.

Huffington Post: 7 things you don't know about a special needs parent

http://www.huffingtonpost.com/mobileweb/maria-lin/special-needs-parenting_b_1314348.html

Came across this article that shares some insights on being the parent of a child with special needs.  I definitely feel like this sometimes.

Losing weight

Not me, unfortunately, but Zachary. 

Got blindsided today when we found out that Zachary has lost weight over the past month, despite the high-calorie oral and tube formulas we have been feeding him.  He weighed in at 16 pounds, 6 ounces, two ounces less than last month.  His pediatrician thinks the backslide may be the result of him burning more calories breathing since he's getting less and less supplemental oxygen during the day or because he's become so much more active, or a combination of both. 

The doctor is not the "sky is falling" kind of worried, but was definitely dismayed, as were we, that not only did he not gain weight during this crucial period for lung development but actually lost a little instead.  So she's determined that the best way to beef him up quickly is to give him sunflower oil, and lots of it.  We'll be giving him up to 25 teaspoons of the stuff each day, which will pile up the calories without requiring a higher volume of the dense formula he currently gets, which he'd probably just throw-up.

We'll see next month whether and/or how well this works.  It does mean that hopes of beginning an aggressive weaning from the feeding tube will probably be pushed back some until he starts gaining weight more consistently. 

If only I had this problem.

Springing forward

I usually despise the day we move the clocks forward.  There never seems to be a good time to lose an hours sleep.  But this year I am a little less unhappy about it than normal because it means we are getting close to the end of RSV season.

RSV, or Respiratory Syncytial Virus, is a respiratory infection caused by germs transmitted in the air or on surfaces on which those who are infected come into contact.  Most kids will have been infected by this virus by age 2 or 3, usually causing common cold-like symptoms in those who are healthy.

But it can be deadly for kids with respiratory insufficiency like Zachary.   A child like him who gets RSV usually ends up in intensive care on a ventilator with higher than normal oxygen until resulting lung inflammation subsides.  So parents of children with compromised respiratory systems are urged to avoid enclosed public places during RSV season, which runs from October to April. 

This precaution normally means few public outings during the late fall and early winter since it is usually too cold to venture outdoors.  Places like malls, restaurants, and places with other kids are to be avoided.  Fortunately, we've had such a mild winter that we've been able to go on walks and get fresh air so we haven't been prisoners in our own home, as often happens with parents of preemies trying to avoid this dreaded bug.

Some who have chronic lung disease like our little guy also get a man-made antibody called Synagis, which inhibits the entry of the RSV protein into the cells, preventing the infection.  So Zachary gets a shot of this stuff once a month for seven months, until RSV season is over.  He's had this protocol administered each of his first two RSV seasons, and probably will the next one too.  Zachary doesn't like the shot, which he gets in his thigh.  And it is crazy expensive, like in the neighborhood of $3,000 to $4,000 per shot.  Thank goodness for insurance!

So this year as we spring forward we're eagerly anticipating some family outings to places that have to this point been off limits.  Makes the lost hour a bit more bearable.  That and coffee. 

What keeps me up at night

I used to stay up at night when I was a kid, like in third or fourth grade, and worry about nuclear war.  I was certain someone was going to accidentally hit the big red button that launched the nukes that destroyed the world.  (Fortunately, we practiced hiding under our desks at school so we'd be safe if that happened).

Strange what keeps one up at night.

Today, I don't worry about that so much, though maybe I should given Iran's nuclear ambitions.  Instead, I worry about whether Zachary's care team would be prepared for an emergency of the worst kind: a compromised airway.  The answer scares the hell out of me.

I have become increasingly worried that everyone, us included, have become too complacent about his care because he is doing so well.  Our sense of being "on edge" so to speak has waned in the months he's been home.  We've had a few mucous plugs (sticky secretions from the lungs that block the tube through which he breathes) but we managed to dislodge them without too much difficulty. 

But danger is just around the corner as long as he has a trach.  That's not just my opinion.  The American Thoracic Society official statement about the care of kids with tracheostomies warns that these children "are at risk for potentially devastating airway compromise."  At any time.  Day or night.  Whether you are ready or not.

Earlier today I made the mistake of reading an article about decreasing the accidental mortality of ventilator-dependent children at home.  It confirmed my worst fears:  that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response, and a lack of vigilance by caregivers. 

The paper provided a shocking statistic that a study of 950 vent-dependent kids at home found that the accidental death rate was 27.5 percent, the same as it was two decades ago.  I remember one of Zachary's NICU doctors telling us that one of the main reasons not to trach him was the risk of accidental death.  We understood that there are risks but ARE YOU KIDDING ME?

We got trained up on dealing with airway emergencies at the hospital.  Learned CPR for kids with trachs.  Learned how to bag him (give manual breaths with a hand-held bag).  Learned how to do emergency trach changes.  But practicing using dolls with no consequences is one thing.  I wonder how we'd react with it all on the line?  Or how someone else caring for him would.

That's what keeps me up at night.

Headed in the right direction

There have been some major changes in the White House over the past couple weeks. 

The biggest news is that we have stopped Zachary's continuous overnight feedings.  Now, instead of giving him 42ml of tube feeding formula hourly during the night, we're giving it to him during the daytime, in addition to what he had been getting during the day.   Might not sound like such a big deal, but it is a major step toward reestablishing his hunger cycles and eventually jettisoning the feeding tube, though that's probably still a ways away. 

So now he gets five "meals" everyday.  The sittings start with a couple tablespoons of pureed baby food or yogurt, and maybe a cookie or veggie stick, which he licks, followed by a bottle of Pediasure, which we don't like so much because it consists primarily of sugar and water.  Then, we subtract whatever remains of the bottle from his total fluid goal for each feeding and give him the remainder though his tube.  We're hoping that this will make him hungrier and more likely to eat more solid food by mouth so we can have the feeding tube removed sooner rather than later.

We also had to part ways with our primary night nurse, who was working five nights per week.  The details aren't so much important; we just had grown increasingly uncomfortable with some things she had been doing.  We've decided not to fill her shifts for now, so we'll take turns staying up overnight to monitor Zachary.  Might be more physically challenging for us with less sleep but in the long run we think it will be much better for us mentally.  And we'll still have a nurse here on Friday and Saturday nights from 11:00 p.m. to 7:00 a.m. the following morning. 

Our little guy also has developed separation anxiety in a big way.  He starts wailing and the waterworks come quick if we leave the room just for a moment, or even if we turn our heads and aren't paying as much attention to him as he thinks we should.  Seems like normal baby behavior but it is sad to see him get so upset. 

These steps are taking us toward a more normal existence, whatever that means.  But the important thing is that we're headed in the right direction.