He did get a fever the Thursday before Easter so we had to go to the ER for a dose of antibiotics. We had an awful ER experience because they had a 'newer' nurse trying to access his port and when that didn't work they had the same nurse try to get an IV in his foot. That didn't work either and they had another nurse come in a try his wrist which didn't work either. Finally they had a nurse from the hem/onc floor come and try his port again. Finally she got it. I will never again allow a nurse that does not have a ton of experience to access his port!
He was obviously quite uncomfortable (not just from being poked so many times) so they decided to admit him. He was constantly grinding his teeth and crying out, my heart just ached for him. I didn't know what to do to help him feel better. They thought he was in pain because he was constipated because he had quite a bit of stool on the X-ray and he hadn't pooped for a couple days. So we starting giving him more Miralax. After a whole day and no action we decided to give him Magnesium Citrate, which he threw up right away, and GoLytely. Within a couple hours he was getting cleaned out very quickly, we had to change his bed twice! He was still very uncomfortable and had a slight fever but there was no reason to keep him and his blood tests all came back normal so we went home. He had been given oxycdone which seemed to be the only thing to help him but it is constipating (along with the chemo meds) so they told us to try and use it 'sparingly'! We told them we would try but when we got home he was pretty much on a schedule getting the pain meds, every four hours. If he was almost due for the pain medicine he would definitely let us know, it was heart-wrenching. You just feel so helpless watching this sweet boy in so much pain. He was sleeping a lot more because the pain medicine pretty much knocked him out, which at this point was the best thing for him if he was going to be in pain all the time.
He seems to slowly be doing better. He is still on the pain medicine but not as often. He is still grinding his teeth but he is not crying out as much. He doctor said that sometimes one of the chemo meds can cause jaw pain and it's possible that is why he is grinding his teeth but there is not much we can do besides give him the pain medicine. He also screams out when I am changing his shirt, like he is in agony. We think he might have peripheral neuropathy as well, which can cause intense pain, numbness and sensitivity to cold in extremities. But the pain meds seem to help that as well. I just hope the pain doesn't get worse again after this next does of chemo, which is all three drugs again.
Please keep praying for this sweet precious boy. And thank you for thinking of us and praying for us and for the comments, they are very appreciated.