3f8 day two wasn't horrible, given the situation. So far I would say that his reaction to treatment is falling in line with round one; both during the day and at night. So mentally we're prepared for what we are going through this time, but it is still exhausting and tiresome trying to find the right combinations of medicines to soothe him. The restless nights kicked my butt last time so as you can imagine, I am looking forward to that again. We are on top of the constipation thing though this time and are already giving him senna and colace before it gets as bad as it did last time. One less problem to combat at the end of this.
Clayton is once again champing it up. He handles everything so well. The intense pain has thankfully not lasted more than 15 minutes either day. After that we are left with hives, sporadic fevers and tongue swelling. We had forgotten about the tongue swelling. After last time, we got home and it looked like he had blisters on both sides of his tongue from chewing it when it was swollen. We are making sure he gets vistral and Benadryl around the clock this time, so hopefully it wont be so bad.
One thing we won't forget will be making sure that they give us our dilaudid to wean him off after we leave the hospital Saturday as well. We were telling the 3f8 nurses about that and they said, "You guys too?" Apparently we are not the only ones that has happened to, just last week that same thing happened to another family. Keep in mind that our beloved neuroblastoma team here at MSKCC are not the doctors that run the inpatient side of things. They are still our primary, but it is general peds doctors that oversee the day to day operations over here. Those doctors rotate a lot and I think it throws them off their game.
Anyway three more days to go...
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