Monday afternoon Danny was admitted to CHOW for a video EEG to monitor an increase of episodes that he's been experiencing to see if they were seizures. These episodes are becoming harder to treat at home with our rescue med regimen so they were starting to exceed our comfort level. We came to CHOW for the monitoring because of his regular neurologist in Green Bay wasn't available so we were lucky enough to have been able to have a neurologist willing to be willing to have us monitored here....with the incouragment of our palliative care dr.
Well in true Danny form while the EEG was on he DID NOT do what we were seeing at home. Those EEG must be theraputic. He did have bit n pieces of the episodes here n there but not all of what we were were seeing. DANNY! I haven't heard much from the "eyes" in the sky (the monitors are called that as the room has a video camera and microphone so Danny is seen n heard while on the EEG....means I should behave myself) so I can assume that what we were seeing progress at home were not seizures but autonomic storms or dyautonomia episodes. Now to figure out what the trigger or why he is having them. Just before they came to remove EEG Danny went into a tail spin of an episode that we just could not stop. I personally have never seen an episode like that from him and I'd like to say I'd never see it again, but sadly he has had more and they are increasing.
Things have now sidetracked to figuring out what is going on and why his system has gone into overdrive. It was difficult at first to get the doctors here to understand my concerns as to why we're were here, as to trying to find a trigger for all of this as he didn't look sick. Well Danny showed them how sick he can get and how fast he can get sick. In an episode Danny will lock his tone, become red as a fire truck, spike fevers normal is 95-96 to 101 in a matter of minutes, breathing rate normally is 8bpm that increases to 50-60's, heart rate is normally 50's that will race into 170's in a instant, he will shake and now whenever awake his eyes are tearing. His system will NOT settle on its own so we have to intervene with meds before his system climb too high which could be ..... Well let's not go there. To say this pulls on his moms heart strings is an understatement. Due to him being in bed and not moving around they put these cool leg massagers on to help, with circulation and prevent clots....well we noticed today that they have left both of his legs severely bruised from his knees down to his ankles, sigh
Labs, cultures, and X-rays have all been done and this is what I know right now.
- RSVP panel is all negative - yay
- X-rays haven't shown any improvement in his right lung pneumonia and might even look worse so there will be a follow up X-ray tomorrow morning - and they have increased his breathing treatment regimen
- His CRP (inflammitary marker) is high
- His White blood count is trending higher which is showing signs of infection not viral
- They are going to be checking his clotting factors as to why the bruising seeing his platelet numbers are improving. We had thought maybe they dropped more and that would contribute to the bruising but this is not the case.
- The first blood culture has grown out gram negative bacilli AND gram positive coxi - there is an infection in his blood stream. We still are waiting for the final results to get the exact organism, but it's looking as if his has sepsis. They are already started round of IV antibiotics in hopes to start attacking it all. They ran a second blood culture to make sure there wasn't any contamination in the first. They ran a third culture but that one was from a blood drawn and not off his port to make sure that this issue isn't just port related and not throw his whole system.
- A urine culture was drawn this evening and we won't have this results back till at best tomorrow.
- From being ill his body is starting to third space (retain fluid)
I'm thankful we were here when this all took a turn and that we can get on top of what's going. But we wait, we wait to see what we are actually dealing with and treat his storms when they hit him as him being ill is only hightening them. My hope is that once we get him better the storms will improve.
I will keep you all posted. Prayers are greatly appreciated.
6 hours ago