Thursday, May 7, 2015


YES we are still at the hospital, we've been here for over a week and unfortunately we haven't found any reasons as to why Danny has had this set back.  Depends on what Doctor you ask. Neuro says all this was triggered by the pneumonia (which he still has NOT had any symptoms of having other then lots of fluid in and around the lungs on a X-ray). But if you ask all the other doctors they will say all this is happening due to the progression of his dysautonomia from the brain damage, so his brain isn't telling eye thing what to due properly. Ugh - Play nice and be a team!  Much to my disappointment there really hasn't been anything for us to grasp as to a concrete diagnosis. I can tell you these episodes he's been having are the worst I've ever seen with intensity and it's effects it has on Danny wile he's in one. Danny's now on 2 hardcore iv narcotics to use as rescue meds, which just breaks my heart. My hope is once we get him over this hurdle things will go back to normal and this protocol will NOT be the new normal, but if it is I'm ready to maintain this at home. The broad spectrum antibiotics that they started on Danny, as they still don't know what they were treating, has now stopped which is a good thing. Now to make sure his numbers showing an infection do not climb back up. Even though he has "pneumonia" (not really) they haven't changed or increased his breathing regimen from home. He has tolerated his food so there has been no change for that either. So other then the rescue meds there really hasn't been a change from what we do at home - SO I started the push to go home.   I'm sick of being here for "observation". We had the all clear to go home yesterday, until his labs came back with his pancreas levels starting to elevate.  Why go home if there's an issue showing itself, right - Did we find the trigger to this tail spin of events.? They did an ultrasound today to check how his pacreas, liver and spleen look like and I believe all is well there.  So a other theory has been thrown down, more and more dead ends.  Once labs are done tomorrow morning if they are stable I'll be pushing to evacuating this room. There have been multiple issues with med screw ups, improper equipment setting, lack of listening to mom/care for Danny so the sooner we get outta here the better. It's really disheartening how fast things get screwed up more when in the hospital.  I'm on guard at all times while here.

Dan took Av to her doctor appt about her MRI on her knee. There was some signs of calcium in her knee but they believe it's still to her knee cap moving. They recommended a new brace for her to wear and to continue physical therapy to strengthen her muscles in her outter thighs.  It's believe that she will grow out of this once she stops growing. Time will tell so we shall see.
Tonight is Av's last band concert of the year and I'm extremely bummed that I am missing it, but I've instructed to have it videoed so I can still see it.  Wow where did the year go?

I was pretty excited to see my lab and MRI realists were finally posted this morning online. All my labs are looking fabulous. Actually this best they have been in a really long time. I believe another bonus to they nutritional cleanse I'm on. Woot woot. Despite me being on a new MS med and feeling pretty good (just some neuropathy in my left leg, arm, and hand), the imaging has shown more newer lesions in addition to more of the ones I already have growing. SHIT!  I'm not sure what is next in the MS journey but I'm just going to take it day by day and enjoy each and every moment. Definitely not the news I was looking for and I so didn't need this right now, but it is what it is. I've sent both my neurologist emails to get their opinions on what to do as I don't see them for a few more weeks. I'll be anxiously awaiting to see what they may say.

What a desturbing, unsettling, senseless,and saddened event has occurred in my hometown. On a walking trail an armed depressed man opened fire at people enjoying the beautiful evening. Now a father and his 11 yr old daughter has died at the scene the mother is in serious condition but recovering from 3 gun shot wounds while saving her 5 & 7 year old from being shot. A gentlemen riding his bike had been killed and then the shooter turned his gun on himself also resulting in his passing. Just heartbreaking!!  Prayers for not only the people involved but for all the people effected by this terrible event.  It's definitely shaken myself and I know many others in our lil city.

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