A Great Day

I wanna back up and talk a little about yesterday and then I'll get to the good news of the day today. I mentioned in a previous post about a nurse talking with me about Post Traumatic Stress Disorder (PTSD), so I limited visits, kept stimulation to a minimal and kept the room quiet and peaceful. In my research of PTSD I came across another condition called Catatonic State, the symptoms fit Jerry to a T. Catatonic State is Generally a neurological disorder however it can be induced by Serotonin Syndrome, patients can be brought out of Catatonia with medication. I got very excited about this, I felt like this might be what Jerry is experiencing and was very anxious to speak to the neuro specialist about it. After talking with the doctor I was so discouraged and loosing hope. The doctor shot down the idea of PTSD and Catatonic State, even though Catatonia symptoms matched almost exactly what Jerry was experiencing the doc said it's not in context Jerry has suffered brain damage from the high fever. Doc could not say to what degree, however if there is even the slightest progress on a daily basis it's a good sign but once he plateaus there's a good chance that's where he will remain, Jerry plateaued the day he was extubated 5 days ago. I asked the doc to do another EEG which measures brain wave activity to see if there is improvement, she gave me the shpeal for the 3rd time that they don't use the EEG to determine brain damage, it's used to determine if the brain is seizing. I explained I understand it's not a tool to determine brain damage however it can show improvement in brain wave activity which is an indicator if the brain is making improvement. The doc was not going to do an EEG and it upset me, I politely said thanks and walked away coming to the conclusion she is of no help or encouragement. Ten minutes later the doc walked in the room and said she ordered an EEG and within the hour the EEG was done. The EEG showed that his brain wave activity had improved and doc said the activity is about 80% of normal, this gave me the encouragement I needed, I understand it can't determine brain damage but it certainly encouraged me that he's got some degree of brain function.

There is one thing I have not posted because it was traumatizing to me and I didn't want to bring worry to others unnecessarily.  On four separate occasions from three different doctors I was confronted on what would Jerry want and to begin to consider how long to wait to make the decision to let him go. I was astounded that they broached this topic so soon into his injury, it had only been two weeks. How can you suggest such a thing when you can't even definitively determine weather or not he's brain damaged, or to what degree of damage if any. After the fourth conversation I began to feel broken down, I knew we couldn't make this decision now, no way this should even have been discussed at this point. I asked what exactly they were suggesting and was told that they could withhold the things keeping him alive, the ability to breath and receive nutrients. My response was "so he will either suffocate or starve to death? ...this is cruel beyond belief and unfathomable to me." They expressed "not as cruel as keeping someone alive as a vegetable against their will." I know what Jerry's wishes are, we've discussed it many times, I know we have to make the decision to honor his wishes if he does not recover mentally. I understand now why they wanted to bring this up so soon, because he was getting stronger physically but not mentally, he would be taken off the ventilator when he was strong enough and you legally lose the right to choose if he's breathing on his own. If I knew without a doubt he was brain dead or damaged and would not recover mentally I would honor Jerry's wishes but no one can predict the outcome and there is no MRI, CT, EEG or any other test that can diagnose the severity of his injury. So NO this is not an option we will fight, we will do what ever it takes and wait as long as he needs to recover. It became very clear to me, it was almost like I had been in a fog and it instantly lifted and I was thinking clear for the first time ...I have to get Jerry out of here. This is not the place for him, why didn't I realize this sooner, it was so obvious from the beginning, as soon as he was out of the coma he needed to be transferred to a rehabilitation center. They don't rehabilitate here, they stabilize and send you away, that's their job.

Once I had clarity on what needed to be done, I spoke with the case manager to discuss moving Jerry to Santa Clara Valley Medical Brain Injury Rehabilitation Center. The case manager was pretty adamant about sending him to a facility in Marin, I was adamant about sending him to SCVM. The case manager contacted SCVM and was told that they won't take Jerry because he is non responsive, this was extremely disappointing to me. I started researching the facility in Marin as well as looking for other facilities that may meet Jerry's needs. I was originally told that they were thinking of transferring him sometime next week so I felt I had a little time to determine where to send him. I contacted the place in Marin and found that their rehab program may be adequate however they will not allow me to stay with him and visiting hours are 8am to 8pm. This is unacceptable to me, other than leaving a couple times to shower and get a bite to eat I have been here round the clock. I need to be with him to assure he's being cared for properly, he does not have the ability to express his needs, I am his voice and I will not be told I can't stay with him. At 3:30 today I was hit with a bomb shell, the case manager informed me that Jerry was going to be scheduled for discharge tomorrow and he would be transferred to Marin because he has medicare once a facility accepts him and a bed is available he will automatically be sent there and you have no choice. If you refuse to be taken to that facility then they will discharge you home. I have the right to appeal however, then medicare will approve or deny the appeal within 24 to 48 hours. I'm not even going to go into the fight I have with medicare it's to lengthy, the short version is Blue Cross was our primary insurance and Jerry had Medicare as a secondary, when Dennis lost his Job we had to pick up Blue Cross through Cobra. At that time Medicare made itself the primary and will not relinquish primary status so we are at the mercy of Medicare and they don't have near the coverage we have through Blue Cross and to make matters worse Blue Cross cannot approve anything that Medicare has declined even if' it's something they normally cover....it's an absurd nightmare. Didn't mean to get side tracked on the insurance nightmare. It's medicare pushing to get Jerry discharged to Marin not the doctors and they don't have the authority to make that happen without doctors orders. The doctor has assured me she has no intention of discharging him before Sunday so we should have until Monday to try and get him into SCVM. If I can get him accepted into SCVM before discharge papers are drawn up then Medicare has to let us make the choice.

Now onto the good stuff, despite the bureaucratic BS, today was amazing. Jerry was finally responsive, today he finally responded to commands ....THANK YOU JESUS!!!!! Myself, two different doctors and Trish were able to get Jerry to respond to commands throughout the day. He's not consistent but he is deliberate and that is HUGE. He will comply when you ask him to stick out his tongue, smile, look at me, look at the ceiling, follow my finger, lift your head. There is one oddity and the doctors only response was "hmmm....interesting". Jerry won't close his eyes or blink, the doc did a test touching Jerry's eye ball lightly with cotton which should make him attempt to close his eyes but he didn't. Part of what is so strange is prior to extabation Jerry was blinking his eyes all the time, we determined it wasn't a good tool to use eye blinks for communication because he was blinking a lot and when you put eye drops in he would squeeze his eyes closed very tight, he's no longer doing this. I have the night nurses on watch to see if he closes his eyes at all to sleep, it's possible he has not been sleeping at all or at least not closing his eyes during sleep. Right now he's snoring however his eyes are open and he is still looking around at things, it's so strange. 

After Jerry's doctor that he's been seeing the last 3 years saw Jerry responding to commands he said he needs to get to SCVM. I said they already declined him can you pull some strings? ....call in a favor from one of your golf buddies, lol? ...can you get him in to SCVM? He said "Let me make some calls and see what I can do" Pray that we can get him into Valley Med before those discharge papers are drawn up.

Thank you all for caring, praying, and leaving comments of words of encouragement I read them all and feel very blessed to have so many people that care and love our family.

Good Night,

Katie