|An owee, feverish and slightly |
Ethan's mucositis and pain have gotten worse over the course of the week. Early in the week we were treating Ethan's pain with morning and afternoon doses of Tylenol supplemented with one to two boluses of morphine overnight when the pain seemed more severe. But he's needed steadily stronger meds and doses as the week has progressed.
The main areas of pain are Ethan's mouth, his throat and his gut. In his mouth, his tongue is very pale and white, indicting that mouth sores may be developing. It's also likely that Ethan is developing sores in his throat and GI tract as well. Sores in his mouth and throat would be irritated by the normal movement of his mouth and tongue or swallowing food. Sores in his GI tract are irritated when gastric acid flows by them. The doctors say that gastric acids tend to build up at night, so its not surprising that GI pain would occur more strongly at night.
Tuesday, when he was on Tylenol, he felt like a kid with the flu, kind of achy and didn't want to move much. When he started showing signs of being in pain even when sitting quietly, then we moved him over to the morphine drip.Wednesday, the morphine helped him forget about the discomfort for a while and we were able to get out of bed and play for a while. Thursday, he was comfortable snuggling in bed, though he really didn't want to be moved at all. Thursday afternoon his mouth and throat really started to bother him and to overpower the baseline morphine.Wednesday afternoon, we started Ethan on a steady stream of .45 mg/hr of morphine. Wednesday night, we supplemented that with two boluses. As of yesterday evening Ethan was still on the same base rate, but starting at 7 pm we started giving him a bolus every 2-3 hours. Today, the doctors stepped up his base rate to .60 mg/hour
We've worked hard to stay ahead of the pain and keep Ethan reasonably comfortable. But it's all best guess since he can't tell us himself how much pain he is in. Obviously, pain tolerance varies widely from person to person. As parents, we don't have the experience of working with a lot of different patients to know when Ethan's pain is significant enough to request a bolus or an increase in his rate. Too much morphine will depress his respiratory system and will mean a longer period to--eventually--wean him off. At the same time, if we wait too long and get behind the pain Ethan will suffer needlessly and it will take larger initial doses to dig him out of the hole.
Until yesterday evening I was feeling kind of clueless about how to approach this. Then I talked with the evening charge nurse about this and she confirmed what I had been doing was a good rule of thumb.. Basically, Ethan's morphine drip should be sufficient to allow him to sit and rest without pain. In addition, since Ethan has tended to experience higher levels of pain overnight, we're approaching that more aggressively with regularly scheduled boluses so that he can sleep comfortably.
So far, this seems to be working. Ethan had a decent night., This morning he had additional boluses at 7 and 11, and at noon the nurse came in and programed his new base rate. At the moment, he and I are snuggling on the bed watching Toy Story 2 (for the 3 millionth time), while I finish typing this entry with one hand.
But, we are on the downward slope of this and Ethan's pain and overall condition are going to get worse before he gets better (when his body starts making white cells so it can heal itself again)..
Fighting an Inefection
His blood work this morning revealed increased potassium and glucose levels. His potassium 3.6 at the beginning of the week, 4.7 yesterday and the initial test today showed 5.7 before a retest showed 5.2. His glucose has jumped from 84 yesterday to 427 today. (Normal range is 60-99).
Ethan had a fever at the beginning of the week. They did a blood culture to test for a bacterial infection and put him on a stronger antibiotic, vancomycin. His fever went away on Tuesday and the culture came back negative so they took him off of vanc yesterday. The fever came back last night, so they took another culture this morning. We'll see if he goes back on vanc.
Sure enough, the doctor thinks he's got a bacterial infection. They've also taken some blood to test for a fungal infection. But the fact that his fever came down while he was on vancomycin seems a pretty strong indicator that this is bacterial.
The doctors have also asked for an endocrinology consult and it seems likely that Ethan will be put on a short-term dose of insulin to combat the hyperglycemia,
To sum up, Ethan feels partly to mostly crappy, but we're dealing with it and with all of the opiates in his system he still pretty much resembles a kid with a bad case of the flu. That will change next week when his hair starts falling out, but hopefully it'll still be under control and he'll just look like a bald kid with a case of the flu. And as the doctor put it when he came by this morning, our job for the weekend is getting the infection under control.
Sunday is Easter and Sarah's birthday. I know that RMH has a huge Easter egg hunt scheduled. (It will supposedly take them two hours to hide all of the eggs.) On Saturday, I'll probably pick up some carry out and we'll have a small celebration in Ethan's room. We just found out that my mother is coming to town next Thursday and will be here for three weeks. I'm sure that while she's here Sarah and I will find a chance to go out for dinner.
I hope you all have a great Easter weekend filled with friends and family and the signs of spring. (If you find any of that last bit, send some up here, we could use it,)