Hospice

It hurts almost as much to type this as it did that afternoon. After the chest tube was placed on Thursday, July 26, our lung team nurse practitioner Brittany called me because I was at home with Annalise. Jason had a pocket of infection (called an abscess) at the bottom of his right lung. They placed a chest tube pretty soon after getting back from the CT.

The next morning, Friday, the team came into the room for rounds with Jason's mom and I at the bedside. They explained several other things that were found on the CT. First of all, with the chest tube placement, they noticed that there was an air leak through the lung into the collection chamber/container. If water bubbles into the collection device when the chest tube is placed, it means that there is actually a "hole" in the bottom of the lung cavity. Every time the ventilator gives a breath, some air goes through the chest tube into the chamber causing the water to bubble. This "hole" can be "fixed" with 6-8 weeks of IV antibiotics in a healthy person.

The CT also revealed another problem. Jason has a hole (called a fistula) between his esophagus (goes to stomach) and trachea (goes to lungs).

We are not sure how long this problem has been there, but it explains why his tube feed is going into the lung and causing E.Coli infection. This problem requires extensive surgery (any surgery in the neck is risky, extensive, complicated, and requires many specialties to be involved) and can be done in a person that is free of infection and is healthy.

Unfortunately, Jason will never be free of infection and will never be a healthy individual with the base disease of ALS. There are no words to use to explain the feeling you get when the doctors say "there is nothing else we can do." I could try to put it into words in this blog, but these feelings and the thought process cannot be explained. In the next few hours Friday morning, we all got educated on the hospice program and palliative care. With this news and the education, early in the afternoon, we decided that hospice was the path that we needed to take.

Hospice is the transition of care from actively trying to treat something (in this case, actively trying to treat pneumonia) to trying to be as comfortable as possible. Well, the goal is so much more than that, but this is the simplest way to put it. More information

How do I switch from doing everything possible to keep this man I love alive to doing everything to keep him happy and comfortable? How do I choose who to call versus text with this news? How do I manage to stay strong through the phone calls because if I am to give this news, I HAVE to be strong for them? It felt like we were where we were more than 2 years ago when we were slowly telling people of the ALS diagnosis.

We transferred from the ICU to an inpatient hospice unit on Friday afternoon. We stayed in that unit for 4 nights where family and friends could come in freely. Jackson and Annalise could come visit and stay 24/7 if we had wanted. Jackson did come once and we brought Annalise twice, but we decided that a hospital is no place for a 7 week old baby. Her Daddy needed to see her though! The unit was quiet and peaceful and really centered around caring for all of us and any needs or wants that we had. It was wonderful to be there and not to be continuously monitored/poked and prodded while we waited for all the details to be set for us to go home on hospice. The staff was so sweet and kind. I could give them a grocery list of items we needed or wanted and they would provide it all. This is not how I do things, but they didn't want me or his mom to lift a finger! Teaching me how to do TLC at its finest! We went home by lunchtime on Tuesday after several things were arranged, including transportation, getting a hospital bed at home, and getting oxygen. We were a tricky case, apparently, because of the trach.

We have spent the past week really making sure we made the right decision (there was no other decision given, really), telling close family and friends, and wrapping our minds around what all of this means. I know many were worried about why the facebook posts all of a sudden stopped. This is not easy to type about, let alone think about. It was important for us to go through the stages of grief prior to telling everyone. We do believe that this is the right decision, no matter how tough it was.

We have been flooded with love, phone calls, and texts. Jason's sister and her family already had plans to fly in for a week, so they kept their plans. (Our niece will remember all of this at 6 years old, so it kick started me into learning some key parenting skills-how to ultimately protect the child and her memories so that she has the best memories of her week here while understanding slightly what is going on) Several friends actually had planned to come the weekend we were in the inpatient hospice unit, so they came to the hospital to visit as they would have if we had been home. Many other family members made the drive to spend time with us this past week. Several friends have flown in and several have driven through and visited in the hospital or at home. We have been doing several things differently, starting with Jason not having to worry about getting in an out of bed and being uncomfortable.

Friends flew in

Love from her "uncles"

He is in a hospital bed in the living room, and I am sleeping right there in that twin bed with him! This is my special time with him. Jason's Mama started reading a book that he picked while back in the hospital on the kindle and that is their special time.

Annalise has spent many waking hours in that bed with her Daddy (she likes the bed better than the boppy in Jason's power chair, plus the bed is safer being she is more mobile!) Jackson asks at least once daily to get on that bed too! Because the tube feeding was going into the lungs, made him feel bad, and is "feeding" his infection, we have decided not to do tube feedings anymore. We are doing a lot of water and gatorade. We have eliminated a few medications, including antibiotics as well.

We have family time all day now <3

Jason's work sent us a meal right to our door-what a wonderful surprise. Those salads included actually lasted us a few nights! Our neighbors also organized it so that starting the night before we came home from the hospital, we had suppers every night for about a week to feed us and all our visitors (this makes me especially happy because I have that need to take care of everyone. I feel like this was a gift they designed for me to be able to do this for everyone making the trip to see Jason) THANK YOU Angela, Tonja, Trish, Val, Dorothy, and Debbie I cannot put into words how much I appreciate you providing this for us.

Jason cannot verbalize how he feels during all of this. It is so tiring to spell things, so he uses his spelling for needs and wants, mostly. He actually used his energy on a day that I was stressed with everything going on to spell "Are you OK?" He is my teammate throughout! I do know that he has so much love for family and friends. I've tried to say that for him. I know he appreciates all your kind words, letters, support and texts. I don't think he has any concern that Annalise and I will be taken care of, as that has been assured to him so often. But he can't say these things, so I will brush the surface of how I feel. I am in awe of Jason's strength and courage through this. He has never given up and isn't even now. He has suffered-I cannot imagine the suffering of someone so active and he has never complained. He is where I get my strength from. I have spent years now trying to keep him alive and there is some sense of relief that he doesn't have to suffer through this anymore. I only hope to instill Jason's strength into Annalise. I hope to be more patient with her than I am with him. I promise to make sure (and I need all of you for this!) she knows all about her Daddy.