Weekend

Jeff and I celebrated our anniversary in Ouray. Jeff’s parents drove from John Day, Oregon to watch the boys for an extended weekend. We really appreciate their generosity in doing that for us. It takes them approximately 16 hours to get here by car. Jeff and I hiked a couple of almost-five-mile-trails and visited the hot springs. We returned to some good news: Zane’s ultrasound of his kidneys and liver is normal (no tumors). Obviously, we are very relieved.

The G-Tube

This is not the first time it has happened. Actually, it has happened a number of times: in The Children’s Hospital cafeteria, at the pediatrician’s office, at home. It has become another one of those typical things with Zane, much like brushing his hair or clipping his nails. His gastrostomy tube button—the one that plugs in the hole in his stomach—came out. This time, however, he lay in a soaked mess of formula and water. I hadn’t noticed it’s disappearance from his stoma area until I went to remove the tubing. Instead of looking at the Nutriport button, there was the reddened hole. Thankfully, it was still open enough to reinsert a new button, fill the balloon with water, and move on with the rest of our day.

In the past, anything medically related would cause a feeling of queasiness to rise from within. I even have been known to pass out. Now, it is just another one of those things that I have to do. Many times—including today—I am the only one here to do it. And, if the button isn’t put into place, Zane doesn’t get fed. The longer it is out, the greater the chances of it closing up (like an ear piercing, I guess). So the reinsertion of gastrostomy tubes is now a part of our new normal.

Here We Go Again

It’s that time again. I’m not talking about flu shots (although, those are on the horizon, too); I’m talking about Zane’s renal and abdominal ultrasounds. Last year, the geneticist from The Children’s Hospital suggested that we begin screening Zane every three months for Wilms’ tumor (kidney cancer) and hepatoblastoma (cancer of the liver). There is a greater incidence of these two cancers in children with Trisomy 18. The geneticist told us that Wilms’ is a fast-spreading cancer, so he wanted us to have Zane frequently screened. However, we have elected to have an ultrasound every six months. He’s due for another this month, so we have an appointment set for next week.

This is one of those things that most parents do not have to concern themselves with. We certainly didn’t think about such weighty issues with Justin. With Zane, health concerns are chronic. While we may be able to push them to the backs of our minds during a healthy run, they always tend to resurface. There is always an underlying worry tied to Zane and his extra chromosome. While none of us know what lies ahead for ourselves or for our children, it is far more uncertain with a trisomy. We’re just hoping for another reprieve—to be able to breath another sigh of relief—after the results of this upcoming ultrasound.

It can be a definite roller-coaster ride at times. A ride that would be nice to abandon in the rear-view window for awhile. A ride that we’d give up forever if it meant a totally healthy Zane. But one we won’t abandon because we need to stay on it for our son.

To Sedate or Not to Sedate

Seemingly easy decisions for most parents often prove difficult with a child who has a different chromosomal karotype—like Zane. At the moment, we are trying to coordinate appointments at The Children’s Hospital in Denver. Since the drive takes a day with kids, we work to fit in as many clinics as possible in a short time.

One of the appointments I am supposed to arrange is an ABR (auditory brainstem response) to test Zane’s hearing. He already has failed three hearing screenings. The next step to indicating where his hearing loss lies is with this ABR. However, the test requires that Zane be sedated. There are risks to anyone under sedation; more so to Zane. The last time Zane was anesthetized (in 2007) he coded twice, his oxygen saturation level dropped as low as 26, and he spent quite a few days in the PICU on a ventilator. This may have been the result of anesthesia; it may have been caused by the administration of morphine on the part of the nursing staff after being advised by me not to give him the drug. Whatever the cause, our son almost died.

While I understand the importance of hearing, I don’t know if it is worth risking Zane’s life. Sure, things may turn out just fine during and after sedation with an ABR. They also may not. The extra 18th chromosome that is present in presumably every cell of his body is unpredictable. His response to sedation may be different than most of ours given this extra genetic material.

We know Zane can hear. He responds to voices, music, and noises. What we don’t know is what pitches, what tones, he cannot perceive through his sense of hearing. But he is a happy child. He doesn’t seem frustrated by whatever absence of hearing he has. His pediatrician really wants him to have the test. I don’t. My instinct tells me it is the wrong thing to do. I’d rather continue to have my happy son who may or may not have significant hearing loss than risk putting him in harm’s way needlessly.

Back to Routine

Jeff and I still have the lingering effects of the end-of-summer, back-to-school cold. Because it had hit our household pretty hard, much of our routine was shoved aside in exchange for rest. For Zane this meant no tummy time, no gait trainer, no practice with sitting and standing. During his occupational and physical therapy sessions yesterday, the regression was evident.

So starting today, we’re getting back to it. Not only for Zane, but for the rest of us, as well. Jeff and I have ignored exercise (who wants to hike or get winded while enduring an upper respiratory infection?). However, we can both feel—and see—the effects. And with Justin fully enmeshed in his new school and after-school schedules, he has to get into a routine, too. This past week, he started both soccer and acting. Normally a very pleasant child, Justin has had more than his share of cranky moments this past week.

So now that we’re all feeling better, it’s time to return to that rigorous schedule of ours. Though it was less than desirable to be sick, it was kind of nice to have a bit of a break from the hectic-ness of our life for a week or two. Back to the craziness :-)

Sleep Is for Pansies!

It was a rough one last night. Justin collected some germs (unintentionally, of course) from school and shared them with the rest of the family. Justin and Zane are further along the road to recovery than Jeff and I are. Though, they are still experiencing some slight symptoms.

I think being out in the rain on Sunday in Telluride was a bad idea. I was up all night coughing; I doubt that I had more than three hours of sleep. At one point, my cough seemed under control, and I dozed off. That was the very moment that Zane chose to wail…for a long time. After Jeff cleared out his nose and gave him some Motrin—we think he’s cutting molars—Zane went back to sleep. I did not. Fortunately, I have a sweet husband who offered to take the day off to care for Zane and to take Justin to acting and soccer later today. I let him take Justin to school, but will find a way to rest this morning so that Jeff doesn’t have to use a personal day.

So, in honor of my friend, Sandy (wonderful mom to Ryan and Drew), I've entitled this entry: “Sleep is for pansies!” A good reminder for today! Thanks, Sandy!

Sad

Sweet little Brianna passed away today. We are very heartbroken. Though we never met her or her family, we obviously feel a close bond with them. Brianna was only four months younger than Zane.

Please keep her family in your thoughts and prayers during this most difficult time.

Again, her website is www.briannagiveshope.blogspot.com

Susan