Friday, June 17, 2011

A Bit of a Break

I took the boys on a road trip to Buffalo Children's yesterday, for Nolan's annual renal ultrasound. They've always been normal in the past, so we were happy to see another set of normal, healthy kidneys. After the ultrasound, there was a bit of a wait to get into the clinic at 1:00 to discuss the results and future plan for Nolan. Killing time in a children's hospital that lacks playing areas for outpatient testing is not an easy task - I managed to sneak back into the radiology waiting room and let the boys watch TV for about an hour, then we headed to the cafeteria for lunch.

WCHOB is a great hospital for inpatient stays or for day surgery patients, but it lacks amenities for kids undergoing outpatient testing. For the longest time, they didn't even have changing tables in the restrooms (thank goodness, they seem to have gotten a clue and added a few of them). In our early days there, I would have to change Nolan on the dirty tile floor of the bathroom.

The cafeteria, for instance, only offers 0.5 liter bottles of soda and juice: there is no juice box or milk carton to be seen. There aren't really any meal choices for kids, either, outside of pizza/fried chicken strips/onion rings. I sat the kids down with their lunches (definitely not reflux friendly) and vowed to BRING our lunches next time. Nolan, of course, immediately spilled his Hawaiian Punch all over the table and himself. Neither boy ate very much, and it was difficult to kill time with a wet and sticky three year old.

We headed up to the clinic a little early, since I have experience with this system. Our appointment was at 1:00pm, and I knew that everyone had an appointment for 1:00pm. Basically, they open up the window and it is a mad dash to sign your name to the list - the child is called based on the position they hold on the sign-in sheet. We joined two other families that were long-term patients: we were all in the know with regard to the madhouse that the urology clinic can be. We heard the shutter roll up, and we made our mad dash to sign in on the sheet. I felt a *little* guilty for not informing the new parents of this crazy system, but I wasn't waiting 3 hours to get in like last year.

We were the second family called in (I could hear the other parents in the waiting room beginning to murmur "wait, your appointment is at one o'clock? So is ours!"). Dr. W. brought in a resident and explained Nolan's case - he's apparently pretty famous since posterior urethral valves are fairly rare (1/8000 births). He's also famous because we caught his valves before they did any damage: since it was an "accidental" finding, we spared his bladder and kidneys. Usually, late-presenting boys are found when they go into kidney failure.

I was hoping we'd be discharged from urology this year, but apparently Nolan will be a lifelong patient. He probably won't have the negative consequences of having PUV's, but there is no guarantee that we won't see problems emerge as he grows. Since he is doing so amazingly well, however, we don't have to come back for two full years. Yippee! I am glad to catch a break with this system.

I also talked to the urologist about Matt's situation. Matt has been on the DDAVP for about 3-4 weeks, and we haven't seen much of an improvement. For about 2-3 days, we thought we had a dry Matt during the day, but he is just as wet as ever. The urologist explained that the DDAVP is not supposed to be used for daytime wetting. Since it is taken at night, the drug is entirely out of the system by the time the child wakes in the morning (it only lasts about 8 hours). We'll finish out this week on the drug, then request an appointment with Dr. W. for Matthew to find out why he can't achieve daytime continence. Fortunately, the investigation consists of an X-Ray and an ultrasound, which are easy, non-invasive tests.

1 comment:

Herding Grasshoppers said...

Hurray for good news for Nolan :D

What a rotten system... everyone having appointments at 1. I think I'd start rallying all the patients to call the hospital administration and throw a big fit. That's so inconsiderate of the patients and families!

Good luck with Matt and staying dry,