I figured it was time for an update, as its been a while. Generally Ann Marie in the phase where the rapid improvement (and rapid setbacks) have ended, and now improvement comes much slower and much harder. There have been no more significant setbacks, although back on Dec 26 Ann Marie woke up unable to open her jaw more then 1/2 inch or so. Turns out that is a somewhat common side effect of surgery as the surgeon needed to cut her jaw muscle. When we called the neurosurgeons office they said oh yeah that happens, but we dont tell anybody about that unless it happens (Ill just say hmmmm, and leave it at that). Now that Ann Marie is completely of the steriods, she fatigues very easily and has little energy. It could be simply recovery from surgery, could be a side effect of the anti-seizure med (#1 side effect is fatigue), or could be a side effect of the steriods - her system may not yet have returned to normal yet. Right now her biggest challenge is the whole category of visual/concentration/reading/using computer/overwhelmed by too much sensory input. While her speech has returned to sounding normal, testing by the speech therapist shows she has some aphasia/apraxia issues (difficulty finding or saying words). Much of the numbness has faded, although not yet completely. In short, things are headed in the right directly, just slowly at this point. Ann Marie and I have a lot to be thankful for. Pray: 1) Sensory overload/too much to handle issues fade 2) Overwhelmed feelings/feelings of panic or anxiety in new or unexpected situations fade 3) Ann Marie uses good judgement in what she attempts to do - not easy for her to judge. In order to recover, she must push herself to her limits, but not too far 4) Visual/concentration/reading/computer use issues fade as expected. 5) Her new group of therapists fully understand her condition and how best to treat it 6) New group of therapists work together and communicate with each other 7) New group of therapists genuinely care for her 8) Energy and strength - Ann Marie has little energy, fatigues easily, and can do only a little each day. 9) That her jaw issues fade - that the jaw muscles heal and loosen up and the PT on her jaw is effective. 10) (HAPPENING SOMETIMES) Good rest 11) (HAPPENING) Left arm/hand recover dexterity/control/strength/feeling 12) (HAPPENING) Numbness in left cheek fades and feeling returns, difficulty in eating/chewing fades 13) (HAPPENING) Vision issues while walking fade away 14) (HAPPENING) Speech issues fade 15) (SO FAR SO GOOD) No pnuemonia or infections set in - this is a big deal. A simple cold could turn into life threatening meningitis 16) (SO FAR SO GOOD) She maintains her current good positive attitude 17) (SO FAR SO GOOD) Strength to do therapy 18) (SO FAR SO GOOD) Safety while making what will be many trips back and forth to the Cities 19) (SO FAR SO GOOD) Ann Marie does not need to return to the regular hospital. 20) (ALMOST THERE) No more relapses/seizures 21) (ALMOST THERE) Better yet, the episodes go away (theyve been on track to do so) 22) (ALMOST THERE) Pain begins to fade so she can start coming off heavy pain meds 23) (DONE) Brain swelling begins to fade (day #3 after surgery is the worst) 24) (DONE) Swelling in throat and tongue fade so she can some off steroids 25) (DONE) Her pain stays manageable on the lesser drug 26) (DONE) That Ann Marie continues to be surrounded by good care givers in the Cities 27) (DONE) That they can help her cope and manage the episodes (there are things we can do they cant) 28) (DONE) That she can maintain her current positive attitude in the absence of family with her so closely 29) (DONE) Insurance allows transfer to Courage Kenny 30) (DONE) Doctors gain understanding of what the episodes are quickly 31) (DONE - WILL JUST TAKE TIME) Doctors find way to handle episodes quickly 32) (DONE) The whole care team works together, not individually and that they all have a appropriate understanding of what is going on with Ann Marie, where she is at and they all understand the episodes 33) (DONE) The whole stay vs go issue - dont even know what to ask for. 34) (DONE) No blood clots 35) (DONE) The delicately phrased issue above 36) (DONE) She comes off the EEG machine so she can do therapy 37) (DONE) That Ann Marie will be surrounded by a care staff who understand her particular needs and take care of them properly
Posted on: Mon, 05 Jan 2015 04:30:35 +0000
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