October 16, 2012

It is amazing how quickly plans change. I'm not even sure why plans exist; it is so rare that what is planned seems to come to be...at least for us. Yesterday our schedule for the week changed and all the tests got rearranged. Yesterday altogether was not the best start to the week. Then I woke up this morning scared to death because I had a dream and while I don't remember the details, I remember Clayton and lots of blood and urine. Which would make sense to anyone who knows Clayton's history; those that aren't familiar with his history probably just think I'm weird. So for anyone who doesn't believe in intuition and even premonitions, just wait...I'm not saying I had a premonition, but I knew something was wrong before I knew something was wrong...you know ?
We successfully completed some day clinic time, a CT and MIBG injection today and thought it was home free to the Ronald until tomorrow evening...and then...at 5:05 I got a call from the hospital. The radiologist had called Dr. Kushner after reviewing the CT and had some concerns that meant Dr. Kushner strongly recommended we come in. So we did. And we didn't get to leave. We are now inpatient. Hopefully this only lasts the night. While this doesn't concern blood and urine it does involve kidney and urine problems similar to those we saw when he had the blood in his urine. The CT showed a serious increase either in the size or fullness of Clayton's bladder indicating it is not fully draining. George and I kind of suspected this and this alone is not a huge deal as long as Clayton is still peeing the majority of it. The problem is that Clayton will hold onto his urine too long every now and again. So whatever the cause and effect going on inside his little body, he is not fully draining his bladder, the stint in his ureter has moved and his kidney is again showing hydronephrosis. Oh what fun!
So now we wait for a bladder scan this evening, most likely followed by a straight catheter (in and out). Then we wait for tomorrow to talk with Dr. La Quaglia. He might decide to do a cystoscopy when he places Clayton's port in order to see that things look OK in the bladder. It is also a sure (but yet to be confirmed) thing that they will at some point schedule the procedure to correct the placement of the stint.
Tomorrow will be a big day, lots of news to come. HAMA results, MIBG scan and results, decisions about his stint and decisions about his bladder...lots to do and lots to think about...
For now, I'm off to wait to do the straight catheter...but first a dose of dilaudid to ease his discomfort...oh great more dilaudid.
This is why I share the good times too, because who wants to be brought down by the bad all the time...