Update

I just wanted to write a quick update after the news has settled in for everyone that reads the blogs. (and clear up a few things that I've gotten questions on)

Jason is doing about the same. I want to type that Jason is doing great, but those words don't seem to fit the situation. I feel that when we wake up in the morning, I have to remind myself that we are on hospice because Jason is about the same as before we went into the hospital and he went on hospice. He maybe even feels better. Granted, we have some good pain and anxiety medications at home and he doesn't have to worry with a whole lot of lifting and his power wheelchair anymore with the hospital bed in the living room, but still. All of this does show that he is more comfortable.

Waking up to remind ourselves that we are still in hospice care is a little nerve racking at times and makes me think through our decisions. "Second guess" isn't the right phrasing because based on circumstances-there really wasn't and still isn't another option. Here are a few answers to some questions that I've gotten. We made this decision together. Jason is completely alert, understands everything going on, and appropriately asks for needs and wants. He is awake for 8-10 hours a day. He is otherwise somnolent, but this was all typical behavior before we went into the hospital. ALS is a very tiring disease, even without activity. Just Monday, I asked Jason if he was still OK with our decisions, and he was. He did ask (he spelled to me) "Can I try OJ?" Well, of course! Remember that we are only giving water and gator-ade because his tube feeds were going through the fistula between the esophagus and trachea. OJ is a little thicker than water, but thinner than the tube feeds, which is why I think he picked to try this. Unfortunately, when I asked how the 1/2 cup of OJ went later in the day-if it stayed in his stomach-his answer was no. He hasn't asked for any since :(

It is very obvious that he is losing weight and fast, but we have no way to measure it....or need to. When Jason has shortness of breath, it is easily cleared up with some suction of mucous. His oxygen saturation (the little device doctors put on the finger) is great in the upper 90s (this is like a test grade. Upper 90s is an "A" When he went into the hospital, it was mid 80s.) So, adding oxygen to his ventilator has kept him oxygenated well, but makes our travel outside of the house difficult. He hasn't wanted to go anywhere anyway, so no worries there. He still has the chest tube at home because it doesn't really bother him and, if anything, keeps that pocket of infection and his lung drained from the buildup of pneumonia bacteria, therefore keeping pressure off and keeping him comfortable. As far as I can tell, his heart is still pretty happy.

Hospice services are pretty great and very convenient. Information on the hospice that we picked-mostly because of his ventilator needs. They will provide you with everything needed from ventilator materials to disposable pads for the bed to medications all delivered to your door. We can easily contact our nurse, Marlene, with one phone call. She has come twice this week and came once last week. We have a phone number to call should we need anything routine or emergent. There is always someone on call that can be here within an hour if we call on nights or weekends. They also have a wide range of services, including pastoral care or a social worker that will come to the house.

Even though hospice has been briefly explained, it can be hard to understand, but I like how the Amity website puts it:

"In medieval times, hospice was a place of shelter for travelers on a difficult journey. Today, hospice is no longer a place but, rather, a philosophy of care that offers spiritual, mental, emotional, physical, and medical support to those facing one of life’s greatest journeys. It is a compassionate approach that allows those faced with a life-threatening illness to maintain dignity and control over their lives and to spend quality time with their family and friends in the comfort of their own homes whether that is in a private residence, skilled nursing facility, or assisted living facility. The goal is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as possible."

Jason's mom is on book number 3 on the kindle after starting to read to him in the hospital. Jason has been reading the Harry Bosch novels since I have known him, and these last 2 books are in that series. We have learned that amazon prime has a TV series on Harry Bosch, which we've mentioned but he has not wanted to watch yet. Jason's parents and I are here all the time. We are trying to take care of each other. His parents are going swimming for an hour or so nearly every day. I go see the neighbors with Annalise randomly, and we have a date to see each other tonight <3 I am sleeping with Jason on the twin bed in the living room. Every night when I crawl into bed with him, it reminds me of beach trips when we have slept outside on the porch on an air mattress (I wish I had a picture of this, as we have slept outside often). Jackson "asks" to get on the bed with him nearly every day and Annalise gets some Daddy love too, of course! I feel that we are always discussing memories and good times while living in the moment too. Back in May, when driving to Georgia for the summer, Jason's parents brought down a whole paper box full of awards and newspaper articles for us to go through and scrapbook. It has been sitting out there in the garage and Diana pulled it out to look at today!

And you all-our supporters. I have trouble keeping up with the texting! And emails! Which I am not complaining about at all. The letters I've read to Jason-just beyond what I ever imagined-ya'll make me cry with every one. And although he won't admit it because he never complains and is so strong throughout, he does have tears himself. I'm glad Jason told me about nearly all these memories because I would have gotten many a surprise otherwise HA! All of those campfire talks on camping trips, car rides, being nosey and asking questions throughout our relationship came in handy! What a blessing it has been for Annalise to meet all of her "aunts" and "uncles" throughout these past few weeks.

We feel the love and prayers surrounding us. We promise that we are doing our best to take care of Jason and keep him comfortable. He is very aware of your love for all of us. With everything I've read him, he is well aware that Annalise and I will be very well loved and taken care of-now and in the future. With this entire journey, I have never thought otherwise. So, even with being on hospice, our journey continues. I do not know what it is like to know that you are dying, nor does Jason really have the ability to put it into communicable words for me to understand. I do know how it is to be a caregiver that has seen every moment through this...good and bad. I do know what it has been like to see him suffer and while there is relief to some extent, there is also sadness over loss that hasn't even happened yet. Please continue to pray for our patience and strength. The ALS journey will not end when Jason is free of it...it will always be a journey in some way for all of us.