A Happy Anniversary

It's hard to believe we lived over 2.5 years with 24/7 oxygen equipment — tanks, compressors, tubes — attached to our son no matter where we went. We kept explosive O2 tanks in our home, traveled with them in our car. We wrestled with yards of cumbersome (and tangle-some) tubing wherever we went. It wasn't easy and I didn't always handle it well, though C always did.

We'd constantly do oxygen math: "Okay, if we're going out for 2 hours, and he's at 1 liter per minute, we should be good with one or two tanks." "We have 7 full tanks in the closet, so if we only use two tanks a day we won't need another delivery for about three days."

We endured the stares of strangers who probably wondered why we were traveling with a tiny spaceman. We had prolonged hospital stays where we felt totally isolated and alone; scary periods where no one could tell us what was going on or if C would even survive; and watched as C was put under anesthesia a few times, including once for a lung biopsy.

But that's all over now. Last week was the one-year anniversary of our pulmonologist giving us the green light to take C off oxygen.

We still use a pulse oximeter at home and school to make sure C's "sats" — oxygen saturation levels — are good (they are). We still need to be careful about viruses and other airborne nasties. And we'll likely never know whether the disease is actually gone or simply in remission. Plus, there are still a couple more tests the specialists want to do — a sleep test and something called a hypoxic challenge test to see if C can travel on an airplane (C has never met his grandmother who lives in California because her health problems prevent her flying, and we still don't have the green light to put him on an airplane).

Still, things could have been so much worse, and for many of the parents we met through the chILD Foundation, they are.

So once again, as rough as things have been, we're grateful and appreciative for how they're turning out.

Stay healthy, C. Your parents are a little exhausted.

98

Above: a nighttime, deep sleep oxygen reading of 98%

C has not had any supplemental oxygen in over a month, and he's doing great! The school nurse checks his O2 levels every day, and we check them at night when he's in a deep slumber, the time when oxygen levels often drop. His levels are always 97% or above. As a point of reference, anything above 94% is considered healthy.

According to his last pulmonary function test, his lungs still have room to improve. In terms of oxygen delivery, however, they're getting the job done! If we can make it through flu season with no setbacks, it should be smooth sailing henceforth.

Breathing Easy

Big news: C no longer needs supplemental oxygen!

Above: an oxygen-free C.

When C first got sick almost three years ago, we had no idea what was wrong. Neither did his pediatrician. After a few months of declining health without answers, we carried our pale, faltering little boy in our arms to the local ER where they discovered his oxygen levels were dangerously low - in the 70s (below 90% is considered dangerous). On top of that, his CO2 levels were dangerously high. Not good.

He was put on supplemental oxygen immediately and has been on it continuously until just a few weeks ago. (Aside: we will always wonder if this period without oxygen was partially responsible for triggering his autism.)

Above: C the night of his emergency admit (the first one, I should say).

It took almost six months to get an official diagnosis. Before that, we got varying theories about what might be causing his respiratory problems ranging from cystic fibrosis to something called bronchiolitis obliterans. At one point, we were told C might have a disease that would require a lung transplant, and which could result in death. Shit.

Above: C feeling better after just one evening on supplemental oxygen.

Thus it was with a giant cry (literally) of relief when the results of a lung biopsy revealed that C had a very rare but relatively benign pediatric lung disease known as neuroendocrine hyperplasia of infancy, or NEHI for short. Less than a few hundred children worldwide are diagnosed with this disease. Little is known about its cause, there is no cure, and the only treatment is supplemental oxygen. It's no cakewalk, but it was better than many of the other potential diseases we were facing: NEHI is not deadly, doesn't require a lung transplant and, as far as the research goes, all children afflicted with it will ultimately outgrow the need for supplemental O2.

We thanked our lucky stars and settled in for the long haul: life with a child on oxygen.

Smokers take note: life on oxygen is a major hassle, not to mention a financial burden. With a child, it's even worse: oxygen tubes knock everything over; explosive oxygen tanks get stored in closets; noisy oxygen equipment constantly gasps around the house; people stare; insurance companies balk at expenses and you do battle for your child; and of course there is the ever-present fear that the next cold will result in another hospital stay.

Still, we're lucky. C is off oxygen, and just before preschool! (To those schools who discriminated against our son because of his medical condition: screw you. We might have sued you if we had the energy, money, and the time. Instead, you bullied us and lied to us. I apologize for the outburst but I had to get that off my chest.)

We will keep the oxygen equipment around for awhile, just in case C has a relapse. There is no study which has confirmed whether NEHI ever truly disappears, or if the lungs simply grow large enough to compensate for the diseased areas. What we do know is that his saturation levels are healthy, and the latest pulmonary function test revealed vastly improved lung elasticity and reduced air trapping. His lungs aren't perfect, but they're much better than just a year ago.

Above: C at a water park around the time of his first confirmed autism diagnosis.

We are thrilled and relieved. Life will be easier in many ways. But I would be lying if I told you this news brought us profound happiness. This outcome means we can simply refocus all our energies on the more pressing issue of autism. I don't mean to say we're not grateful and happy: we are. Most of all, we're grateful that C will enjoy life without the limitation being dependent on supplemental oxygen.

People have asked what C's reaction is to being off oxygen. Does he notice it? Is he happier? I wish I could say he was thrilled to be off it, but the truth is that he hasn't shown any real difference in demeanor. His usual obliviousness is, in this case, a blessing: he never really seemed to mind being on oxygen in the first place.

That said, the other night I asked him if he missed his (ever-present) nasal cannula. His response? He smiled and stuck his fingers into his nostrils.

That's my boy!

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If you would like to support a fantastic organization that does a lot to help parents of children with pediatric lung disease, please visit chILD Foundation and consider making a donation.

Anasthesia

After the pulmonary function test (PFT), monkey stands guard (as he has almost since day one).

Just a Boy

I saw people looking at C today, but the glances were different. They weren't looking at a sickly child with a nasal cannula, just a little boy with big eyes and curly hair on a family outing. We removed C's oxygen tube so it wouldn't get wet during his first swim lessons.

We've been taking C out with no oxygen a lot lately, and he's doing well without it, even for prolonged periods. Normally, though, we coil his tube into a small backpack.

But not today. Today he was just a boy — a boy with some silly gestures, funny expressions, and quirky mannerisms, but a boy without an obvious illness. It felt odd, but it also felt great.