We had to wait at the hospital until 6:45 last night (Tuesday night) to be discharged. Before we could leave, they wanted Clayton to pee so they could then do a bladder scan and see what kind of residual urine was still in his bladder. He had a huge pee and soaked the bed that morning before his scans and then he didn't drink anything for hours, so there was nothing to pee for hours. We obviously cannot force him to drink or pee after he drinks, so it was a long day. The good news is that he did not have to have a catheter. After he peed and they did the scan it showed he had only around 109 cc's of residual urine, so they were ok with that. So no catheter! (To put that last statement in perspective, they have drained 1200 cc's from his bladder before)
We all got up this morning and headed out at 6:45 to get to the hospital because we were first on the list for an MRI. Early tests are the best; it means he can eat and drink sooner. They did the MRI and gave him a flu shot while he was under. Then, since the inpatient team didn't bag him for urine collection yesterday, the nurse asked me if I would be OK if she did a straight catheter while he was still under sedation. I agreed because it solved our problem of having to bag him and collect his urine and it answered the doctors' question of what kind of residual urine he had today. In the end every one was pleased with the outcome; and Clayton was none the wiser. Afterwards we met with the surgery team again and then did some x-rays and our day is done...our week is done...pretty much.
All of our scans are now behind us and all we have left is his port tomorrow morning. We are so excited about that. No more Hickman and he will get to ring in his 4th birthday with a bath! Two weeks from tomorrow, he can have his first bath since November 19, 2011! No, I'm not kidding. Super, super excited!
Hopefully we will have MIBG results tomorrow and then bone marrow results next week. After that, we have nothing! Nothing for at least three weeks. We will be starting his accutane (yes, the acne medicine; it matures neuroblastoma cells which is a good thing) either Saturday or Sunday. He will take that for the next six months doing cycles of two weeks on and two weeks off. And at some point we need to touch base with Dr. Terry again, but it doesn't have to be immediately. So we get a nice break at home. Just in time too, because we have back to back weeks of an anniversary, Halloween, Angel Ride and most importantly Clayton's Birthday!
I'll let everyone know how tomorrow goes...
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