Induction Day 23

A quick update cuz I'm tired.

Nathan had surgery this morning to remove his port.  It went well, and while he was still groggy they did an ultrasound in the recovery room so that it wouldn't hurt his very pained left side.  He had a fever before the surgery and still had it afterwards.  It took about 5 hours for it to finally break at 3pm.  The highest I had seen was 39.7 but then I headed back to work.  The sent the end of Nathan's port line in for culture to see if anything grew - we hadn't heard anything back by 10pm.

The doctors are still confused on what is going on in Nathan's abdomen and we keep getting different answers - very confounding.  First it is caused by pseudomonas, and then it isn't and is likely Typhlitis, then it is again, then it isn't again - each doctor from each area (oncology, resident, infectious disease and internal) seemed to have a different theory - who do you believe??  Nathan then had a CT scan at about 6pm tonight.  It showed essentially the same as the ultrasound which is a thickening, or inflammation, in the lower large intestine.  The plan, as of this evening anyway, is to continue on the current treatment course and they are going to add a third antibiotic which I forget the name of.  Dr Ali called today the nadir and that Nathan would start getting better - we pray that he is right.

Another distressing issue is that they are having trouble with the pain management.  The morphine that they were using to control his pain may also be causing issues as that one of the side effects of morphine is to shut down your bowels.  That led infectious disease doctors to recommend that Nathan be removed from morphine.  When we asked what they recommended to replace it with, they said that was up to Dr Al to figure out - not overly helpful.  All they have done so far is to reduce Nathan from up to 5mg every 4 hours down to 2 mg every 6 hours.  They may as well remove it entirely because those 2 mg last for about a 1/2 hour and then Nathan is in pain for 5.5 hours.  It is very hard to tell your son, who is begging and pleading for pain medicine because it hurts so bad, that he cannot have it for another 5 hours.  And this is a tough kid who actually gave blood peripherally and had GCSF injected into his arm today, both without flinching.

The plan to recover now is essentially bowel rest, run the three antibiotics, and give Nathan G-CSF to help the WBCs start coming back up.  We have a video conference with Dr Lewis at 1:30 pm tomorrow but our line of questions have certainly be derailed by this latest hurdle.  My short post is getting long, so I'll end it here.