The Year of Adventure and...Surgery.

What? you say. Two pictures today? Why yes.

In 2011, when Zane was still four, he started his adventures with ASA (Adaptive Sports Association) in Durango. He absolutely loves motion and has a blast on the mountain.

 

 

It's also the year my little monkey had surgery for the first time since his gastrostomy tube placement in 2007. He was such a trooper and a rock star.

 

In both photos, Zane has stuffed animals. But in reality, he doesn't particulary care for them.

Post-Surgery

Things have been busy since our return from Denver, thus the late-ish post.

Zane is still on the mend from his surgery. Unfortunately, he managed to get to his eye and do some major rubbing (which was a huge no-no). I'm hoping he didn't release the sutures and undermine his whole surgery as his eyelid (today) seems a bit droopy again. There is a tad bit of swelling that remains along with bruising, so maybe it's just that. The surgeon said to call the office if the left eye didn’t completely match the right by Monday 8/6. So I’ll give him a call tomorrow. I doubt there’s anything he can do.

The Friday after surgery, Zane and I returned to the hospital for a digestive emptying scan. It was a part of the investigation into his retching and vomiting. It was pretty much a disaster. The plan was to feed him his formula with a nuclear medicine added to get pictures of his upper digestive system to see how slowly or quickly food moves through. It was imperative that Zane not vomit the contents of the formula/nuclear medicine combo or the test would be ruined. The trouble began with the quantity they planned to give him. Zane normally receives 160 mL over an hour. They gave him 240 mL in a matter of two minutes. I warned them it wasn't a good idea to give him that much. They did it anyway. Only moments into the scan, Zane coughed. That was quickly followed by vomiting. They restarted the test after he stopped, but the test results were considered skewed. Zane continued to whimper and grimace for the next forty minutes—all the time attempting to rub his eye for comfort. The whole test was filled with stress. I was glad to be done with it all.

Since arriving home, Jeff and I were able to get away for chunks of time on Thursday, Friday, and Saturday. His parents came to watch the boys so we could bike ride, tube down the river, and have dinner in town. Unfortunately, Zane wound up with a fever. I blame the visit to Children’s. This will be the third time he’s picked up a bug after a trip to the hospital. He’s still fighting a fever as of today. Though it’s low-grade, Zane is quite miserable and mainly wants to sleep. I haven’t given him any medication to fight the fever, hoping his body will fight off whatever virus he has. I just hope he improves by later today. He has an in-town appointment tomorrow to have another TLSO made. Sounds like grand fun, huh? Poor kid.

Denver, Take Two

We made it to Denver on Thursday night after a very slooooow ride over Wolf Creek Pass. Throughout the whole ride out of town, we seemed to be chased by an incoming winter storm. We thought we were ahead of it until we climbed the pass at 10 mph, following vehicles ill-prepared for mountain travel in the snow. Wheels spun, trucks pulled roadside, and two-wheel-drive cars crept. But once we arrived on the other side, the weather cleared, and it was smooth sailing to Denver.

Yesterday, Zane had his appointment with the pediatric gastroenterologist. She was very thorough, questioning us about each and every aspect related to his feedings and issues associated with his stomach. When we return to town, Zane will have the same tests Justin had for his stomach issues: blood and stool samples to check for celiac and bacteria. If his labs come back normal, he will—unfortunately—have to be anesthetized again and have an endoscopy here in Denver. The doctor did state that Zane’s stomach issues may be resolved after he has his ureteral reimplantation surgery on Monday. Sometimes, children experience GI problems with kidney reflux, which I had not known.

We had planned to go to the zoo this weekend, but the weather has trumped us again. It is cold and rainy with snow in the outlying areas. Not an ideal scenario for visiting animals at the zoo. Instead, we will go to the Denver Museum of Nature and Science.

The only one who has been sleeping well since we’ve been here is Justin. Zane has had some wakeful nights. We are certain it is stomach discomfort, which hopefully will be resolved in time. For so many reasons, I will be happy to return to the Durango area: sleep, recovery, and being in a place where people accept Zane as he is. I cannot BELIEVE how many people blatantly stare at him as if they have never seen a disabled child before. We simply do not get those gawking looks in Durango and Bayfield. Those who stare won't even lift their eyes briefly to see how piercing my own glare is toward them. Come on people! I understand curiosity, but don't be rude, all right?

Surgery is still set for Monday morning.

Next Steps



Despite all the efforts of Zane’s pediatrician, she has not yet found a solution to his vomiting/coughing/gagging. We tried switching his prophylactic antibiotic—thinking he had a reaction to it. We changed his allergy medication and increased his Miralax dosage. Yet none of this has worked.

After speaking with the doctor on the phone today, our next step appears to be testing. Poor kid. It’s really the last thing he needs. He has been through so much already. She is going to talk with a GI Specialist and see if he/she wants to proceed with upper and/or lower GIs. I had an upper in the past, which was not so bad. I had to swallow barium. Not sure how that will work with Zane since he does not consume quantities by mouth. IV perhaps?

Keep good thoughts for Zane. He has a lot coming up within the next month or so: GI testing, fitting for hearing aids, and his surgery on September 12^th.

Kidneys, UTIs, and All That Fun Stuff

Well, it has been awhile since I’ve updated. Things have been mighty busy and crazy. Zane wound up having another UTI. He is doing much better after a ten-day course of antibiotics. In that time, we traveled to Phoenix to help with family matters, as well.

Both boys had well check-ups yesterday, but nothing definitive was decided about Zane and kidney surgery. Given his recent UTI, I expected to hear that surgery was imminent. Instead, I went away uncertain and a bit confused. I left the office with an order for another VCUG. Zane’s urology appointment (this time in Durango) is scheduled for July 18th—a little too long to wait in my mind. So I called the urologist’s office for some direction and clarification. It seems all we do is test our poor guy, but not really resolve the reflux issue. Clearly, the amoxicillin is not working as a prophylactic anymore, so I insisted the pediatrician consider a new antibiotic for Zane while we wait. She’s looking into it. Anyway, the nurse practitioner at the urologist’s office is going to ask the doctor if he will review Zane’s VCUG prior to July 18th to determine whether Zane needs in-patient surgery or not. That way, we can likely have it done before the school year begins. Of course, this may have to be coordinated with the ptosis surgery, as well: a surgery for which we still need a consultation. It really sucks living seven hours from a children’s hospital.

So that’s where we stand. I am going to try to get the boys on a summer schedule I created for them back in May before everything went crazy. They both need structure, academics, and exercise. Our summer motto: no regression! They need to enter school in August at the top of their games!

Post-Pediatric Update

From all appearances—meaning the initial testing of urine—it seems Zane has another UTI. We have to wait 48 hours for the culture to grow in order to make an actual confirmation. But, for the time being, he is on a ten-day course of antibiotics.

In the event Zane does have another UTI, the VCUG requested by his urologist will simply be bypassed. Likely, he will move forward with in-patient surgery to correct his kidney reflux. Each UTI Zane experiences causes further scarring, which can lead to damage to his kidneys.

We don’t know any details yet, but I assume Zane will have the surgery sooner than later since the prophylactic antibiotics failed to do their job. Initially, I had mapped out in my head an August trip for out-patient surgery and consultations. We’ll see after Thursday’s results if the plan in my mind can remain in place or not.