August 11, 2012

3f8 Day 5...end of cycle 1

So we finished 3f8 on Friday. It was a long week. Clayton continued to do good during the infusion, and we continued to deal with the side effects as they came. Thursday he spike a fever. Not abnormal for this treatment, but they did cultures to be sure. Nothing grew. Friday he spiked a fever again. More cultures. Again nothing grew. Meanwhile, we continued to deal with residual pain and hives during the last two days, but ended up with some other issues. First, his tongue had been swelling for a couple of days from the treatment and it drove him nuts! Then we noticed that starting Friday morning, he wasn't peeing. Urine retention...oh yay...somehow we missed that that can be a temporary side effect of the treatment as well as a side effect from dilaudid. We spoke with the doctor on the floor Friday night about what to do. Let me start by saying that the doctors on the floor are general Peds attendings, not our oncologists. That is an important distinction. This doctor (a fellow) and I had different opinions about courses of action. No confrontation, just different opinions. However, despite my better judgement and my intuition, I agreed to proceed with her suggestion to try lasix. Didn't work. Lasix gets excess fluid off of the body. In other words, it will further fill up his bladder. The thing was, that we knew his bladder was full, we just needed it to empty. Adding more to it just didn't seem smart. Yes, lasix can sometimes trigger the bladder to empty itself, but when your baby's belly is big and hard and you know his bladder is full, sometimes just doesn't cut it. That is why I had felt an in and out catheter was the best course of action. I would NEVER suggest a catheter unless I thought it was necessary. So the nurses come in to do the catheter and George and I are like "Wow, that is a big catheter, isn't there a smaller one?" They said no that was the standard size. No my friends it isn't and George and I knew better and should have been forceful about it. (I assume most of you don't, but for those that know a thing or two about catheters, these night nurses were trying to use a 16 French. That is a BIG catheter.) Instead, they proceed to try and place it, but were unsuccessful because Clayton's body was so tense. So they retreated. The day nurse then comes in (this was all at 6:30 on the morning), we try and figure some things out and a couple hours later we tried it again with an appropriate in and out catheter. Success! We drained 1300 cc's off his poor bladder. I would love to be pissed at the doctor for not acting sooner or at the nurses for not knowing which catheter to use, but George and I knew better and should have stood up for Clayton better. At the same time, those things are their job...
We got Clayton back to the Ronald shortly after that Saturday afternoon. He was far from himself and I just kept hoping he would wake up later a little more like the little boy I know him to be. The last few days were hard because he doesn't talk to us to tell us if or where he hurts. We were fighting constipation, then diarrhea, fevers, then urine retention, a huge belly and only moderate oxygen saturation levels. Everything is a balancing act and there are multiple possible reasons for why he was experiencing each symptom. So trying to figure it out was not fun. Top it off with this newly acquired habit of picking at his top lip and his poor tongue that looked like it had blisters on it from where he would bite it when it was swollen and he was just not in a good place. Oh and then we had to bring him off the narcotics. So I thought being at the Ronald would finally make for a good night's sleep for everyone...wrong! It was a miserable night. We didn't have dilaudid to wean Clayton off (long story) so he was irritable and restless. It was bad...until I remembered I had Ativan; for him not me. ;)
Now that I've given y'all our sporadic tale with so many unnecessary details. I'll tell y'all where we're at... HOME! I'm a little nervous because he isn't himself just yet, but we are home. After we got here Sunday night, he got on his feet for the first time since treatment started. Oh and he had started drinking again on Friday, so that is still going good and he is throwing some food in the mix too. His belly is still big and that always makes me nervous, but it is seeming more and more like a lot of that might be gas. Hopefully that stuff will work itself out in the next couple of days. We are going to try and check in with his pediatrician here real quick in the morning and then hopefully, we won't have anything left to do until September 10th. Crazy! As long as there are no complications, we are free as birds for a few weeks!

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