01/19/2016
Everyone, I forgot to sign this. Erik is up North so he most likley won't be available to schedule the visitation. Call Carol or me, Vance, at 714-420-1997. Thanks again!
I have not written anything on Barry’s conditions since its inception on September 2nd. The following is a detailed account of where we are now. It is not pleasant, but should give you better understanding of Barry’s condition, and what help you may be able to provide. It is long, but if you care about Barry, I implore you to read it all, and consider all of the content carefully.
In conversations with the doctors the last week, we have gotten news that is grim going forward. In short, the hill Barry had to climb has become a mountain. And he doesn’t have a lot of the gear.
Communication with most of the doctors have been poor and sporadic. Unlike the other facilities in Corona, where we would receive updates and phone calls on a daily basis, here we have to track down the doctors. If we do not call, we would not hear anything. We are lucky if we hear from a doctor once every week or two.
In a conversation with the pulmonary doctor, he stated “It doesn’t look good”. That is vague and I asked him what that meant. I noted that every time he tries to get the settings lower on the ventilator, he has a problem and they have to crank it back up to a high level of assistance. He said, “Exactly. But we will try our best for him”. Not a whole lot of specifics in that explanation. To this date, he has been on a very high level of support for 9 straight days. This is the longest he has been on this level of assistance, which is not good. Other respiratory therapist I know have indicated he should be being treated differently, and perhaps more aggressively. Setting him on the vent at max does nothing to help strengthen his respiratory muscles.
The psychologist was just assigned to Barry a few weeks ago. Barry has never really given a lot of credence to these doctors, and has for the most part not engaged with him. However whether his lack of engagement for that reason or if it is because he is just too tired/drugged remains to be determined. The psychologist was able to get out of Barry that he is extremely lonely, depressed, and cries a lot. While Carol and I have the place covered for a couple hours every day, I can only imagine him lying there and losing track of time and feel like it is a lot longer without anyone seeing him.
Physical therapy has discharged Barry as well because they have not seen an improvement. His lack of participation the last 3 weeks is very problematic and so they have re-assigned him to a lesser therapy regime, which only makes it harder to get him stronger. For every few days of therapy he refuses, it seems to set him back more than a week.
The main doctor told Carol that they should have seen some improvement by now. Not only have they not seen any improvement, they see a regression. For this reason, he feels that Barry refuses therapy not necessarily because he doesn’t like it or want to do it, but because he physically cannot do it. He indicated that he would continue to develop pneumonia, as he has several times, until eventually his body would give out. The neurologist finally got back to Carol as well after repeated attempts, and indicated that he has examined him several times and sees no improvement, and in his opinion he will never get any better. So 3 doctors basically suggested there was little to no hope.
This story of what has happened to him and his current state has many clichés. However, they resonate deeply. One of which is something along the lines of being thankful for every breath you take. It is something so seemingly insignificant that you don’t think about it, but watching someone depend on a machine to help them breathe is awful. I can guarantee you that on September 1, Barry had no idea that those would quite possibly be the final breaths he would take on his own. So when you are sitting at your desk, or walking to your car, or any time you are able to think about taking that single breath, be thankful.
Another cliché is “I wouldn’t wish that on my worst enemy”. I can honestly say that I would not wish this on someone, no matter what they had done. The tiniest things in life, Barry may never be able to do again. So when you change the channel on your TV with the remote, or slightly step on the gas pedal in your car, or pick up a cup to drink some water, just know that Barry can’t. Barry is in many ways a prisoner in his own body. He cannot feed himself, does not have the strength to or ability to even make a fist let alone lift up a hand. He cannot cry out for help if he is in distress. Cannot move or signal to get what he might need. His communication is largely done by mouthing words and hope someone can understand him. In limited circumstances he can speak with a valve they put in his trach, but he feels it takes too much air away. This is a very rare case, however I heard he was able to do this on Sunday. When this all started, I was filled with hope. I figured once he survived the initial attack, he may have some permanent partial paralysis and may take a year to get out of there. I was fairly certain he would not be able to do the things he loved the most in life again. Simple things like cooking, driving to the mountains or holding a fishing pole. It sounds like a terrible fate, and now I would be thrilled if that was the prognosis. The situation he is in is nothing short of cruel. The level of despair he must feel is difficult to quantify.
So what about the doctors that have painted such a bleak picture? That is where you come in. For the first few months, Barry indicated that he did not want to see many visitors because of his current state, and his inability to communicate. With his severe depression, we think now more than ever, visitors will help him. About the only thing we can think is that if he feels more positive, and feels he has something to live for, he will try. He will make attempts at therapy and engage with the doctors instead of refusing. So if you can, please come see him. Call me or Carol if you like, just in case you drive over there and he is sleeping. (Thank you Lucy Aedo and Jenn Aédo for coming to see him even when he was sleeping. He remembers a little bit and is very happy about the calendar!) One thing I was able to glean from our communication over the last 4 months is that he does not want to be forgotten. As a very social person, being confined to a bed without the ability to communicate and essentially stare at the wall or ceiling…it is difficult to ascertain what kind of Hell that would be like.
If Barry has ever made you laugh, if you have ever shared a moment with him, now is your chance to give him a little hope. It may not seem like much, but it can go a tremendously long way. Let him know you want him to come home. Let him know you are pulling for him. If he knows you aren’t giving up, then maybe he won’t either. We certainly are not ready to, regardless of the doctors’ grim prognosis.
I also would ask please that you to reach out to Carol. Call, text, or message her on Facebook. She is going through the worst thing in her life. While still working full time and doing her best to keep some level of sanity, she is managing the office, trying to figure out bills, insurance, and what the next steps are, all while watching her husband in one of the worst possible states a human can be in, and struggling to keep it together.
Thank you all who have read this. I apologize if it was too detailed, but we need those that truly care to understand his current state. We never had a lot of options to begin with, and now we have even less. So if a visit from you will help, and we think that it might, we will gladly take it. Thank you all for staying involved. The support means a great deal.
Vance Long Vance N. Long Carol Long Erik Long Barry Long
