Brain MRI

Thanks to all of you who texted and called throughout the day today to share words of encouragement either for Phil's MRI this morning or for the struggles we've had with our ailing kiddos.  Our day started out well with BOTH kids heading off to school happy and seemingly healthy, or at the least, afebrile!  It always amazes me how restorative eight hours of uninterrupted sleep can be.  But who am I kidding?  In point of fact it was only six hours but anything more than four feels fantastic!  I can't rightly remember the last time I had eight hours of sleep and that my friends is a crying shame.


After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say.  The creatinine level has stabilized along with the potassium and magnesium levels.  Phil is slowly putting on weight at the rate of a lb or so each week.  He has a stable anemia which does not need to be treated at this time and is gathering energy day by day.  Dr. Kossman is now comfortable with seeing him every two weeks in follow up.  Praise Jesus for one less appointment per week!


We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school.  Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking.  Oh well, the best laid plans...  So, we picked him up and headed home to wait for the MRI results.  It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun".  Did I mention it was a long afternoon?  And that it wasn't any fun?  For anyone?  I could digress here but I shan't.


We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."  


The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot).  It does not represent any new process or danger.  The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far.  Exactly what we were hoping to hear. 


However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past.  Edema always shows up after brain surgery and brain infection and is to be expected.  The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.  


Dr.'s  Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps.  It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now.  They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function.  Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce.  Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting.  There is a slight left to right shift beginning now that will need to be monitored.  Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it.  Tomorrow's update will determine another important step in Phil's battle, yet again.


Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week.  He is understandably getting tired of being hooked up all the time.  He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old.  I know how difficult it is to be on this roller coaster and I'm not the sick one.  I need to remember that when I want to pull my hair out - at least I still have my hair!