Brandon Update

Well it has been one medical thang after another the past few months and the kind I really hate.  The wait and see kind.  I think I wrote earlier that Brandon had a nodule in his lungs.  For a month Brandon has had 3 nebulizer treatments a day followed by CPT (chest physiotherapy).  The specialist believed it was a mucus plug.  So I told Brandon we needed to get aggressive to "unplug" the nodule.  After another xray, we received confirmation that Brandon's chest had cleared.  He still does not sound great at night and we are still using the nebulizer for night treatments but he is great during the day. 

While in the middle of trying to clear Brandon's lung, Brandon flunked his quarterly EKG.  I tried to ignore it for a few weeks but it came back in full force with some urgency to see a heart specialist.  In the meantime, a heart specialist reviewed the EKG and stated that Brandon may have right ventricular hypertrophy.  I looked this up and it doesn't sound good and can be related to his lungs.  So we were still nebulizing while I called around about the heart thang which could be related to the lung thang.  I haven't mentioned this but Brandon had an impacted bowel this summer and he has not 100% recovered from the damage.  So we are also dealing with this and I wont go into details.  But I may need to have a plumber on retainer.  So while dealing with the heart thang, the lung thang and the bowel thang Brandon starts having seizures.  They have been going on for several months on and off, but I have not noticed it much in comparison to everything else until the last two weeks when he collapsed at school and then could not walk.  They have started to happen everyday.  At first I wasn't sure if Brandon was trying to get out of class but I cant deny the symptoms which are hard to make up and Brandon swears on his Beatle Bible that he is telling the truth. 

So the good news, Brandon's cardiologist reviewed the EKG against our last visit and believes we are fine.  Yea.  The lung nodule is gone - yea.  The bowel thang continues but is manageable.  But the seizures seem to be indicating that Brandon's current medication of tegretol is not fully working now that he is a teenager and I am discussing new medications with Brandon's neurologist for Brandon to add.  Scary.  We have been so blessed for almost 17 years with very few seizures.  They have been mostly controlled except when Brandon grows quickly or he is very sick and there is a breakthrough seizure.  When Brandon was 2 he was on phenobarbital.  It stopped working and we tried to ween him off that medicine onto tegretol.  It did not go well and we ended up in the hospital to make the change of medication.  I am hoping this will be smoother.  I really feel bad for Brandon having to go through these bad seizures while we try to find the right formula.  He is a real trooper.  So we are really hoping for all of this to get cleared up and no more new things to deal with each day.  Brandon of course is just looking forward to his birthday and Christmas and asking Santa for all things Beatles. 

In the meantime I am in full force learning SSI and power of attorney getting ready to apply and complete on Brandon 18th birthday in December.  More on this coming up. 
Leah