Saturday, March 31, 2018

March 31, 2018 : One moment

One moment changes everything. This journey with Sammy has been filled with these moments. More of these moments than any one person should have to endure. Any parent should have to witness. Over a week ago, we were told there is nothing more that can be done for Sammy. Our options were ones we were not willing to make Sammy endure. He has already suffered enough. We want Sammy at peace. No more suffering. No more pain. We want our son to be free. We are doing everything we can to keep him comfortable. He is on a continuous flow of dilaudid, with bolus available every 10 minutes. To be given as we see fit for keeping him comfortable. He is also on Valium and Haldol. It has been a struggle to find the right balance for what works for Sammy. We hopefully have found the combination that works. We will be constantly adjusting his doses as he progresses.
It has been a very hard couple weeks. We have had some great moments with Sammy, but also many very difficult ones. Ones that will tear your heart out. Watching Sammy suffer and being unable to give him any relief. It breaks my soul. I wish I could endure it all in his place, take his pain from him. Take all this suffering from him. The past couple weeks have been filled with moments I would love to forget forever. Conversations no parent should have to discuss. Calling mortuaries. Picking out a casket for our 6 year old child. Discussings funeral plans. Wishes for a memorial service and burial. Getting things in place, while we have the strength to do it. Lining up the support so when the time comes, we can have others take care of most of it.
Watching and waiting is hard. Sammy changes day by day. Things are progressing slower than anticipated, but can change any moment. We may find he is having moments of awareness right up till he passes, or he may go into a comatose state prior. We really have no idea how things will progress. We just keep monitoring all the symptoms and signs. Waiting is the definitely the hardest. And while we have finally gotten him to a good place with his medications, everything is fluid and constantly changing. So we are always adjusting. Good moments turn to bad ones quickly.
Charles and I are pretty exhausted. We are trying to get better rest, but nights seem to be hard all around. Logan is struggling with sleeping. He is certainly reacting to all the emotion of our home. So we are trying to support him the best we can. He is certainly having a rough time with things right now, being an almost 3 year old in this situation. We are working on giving him attention and supporting his needs through this process with Sammy the best we are able. With Sammy it is just a lot of work. Medications around the clock. It takes a couple people to move him from one space to another. He keeps us up and busy. But we are working on getting a better plan and support in place.
We do have some nursing care, but it is not around the clock. We have some nights covered and we had some days covered, but it is not 24 hours a day. If we feel we get to a place where we need that type of coverage, we will have to really look at transitioning Sammy back to Ryan House. That would be the next step in increased coverage and support for him and our family. We are looking at taking him back for end of life care, but we are not sure when we will be making that move. Right now we are trying to listen to Sammy to see how he is doing, as we do not want to go sooner than necessary, knowing his wishes.
It is all just hard. We know Sammy wants to be home, but home we do not have the full coverage and support all the time. We can call and have on call nurses come to make changes and support us. It just is not the continuous care we could use. Moving to Ryan House add a lot to our care plan, but ultimately as long as Sammy is aware of his space, we know he wants to be home. It is hard, and our team is very understanding and all are supporting us with his goals in mind and our goals in mind. But no one has a crystal ball to tell us how things will happen and when. So we continue to make the best choices we can with the information we do have concerning his health.
Please continue to pray for our family. Just cover us. Our hearts are so heavy as we continue in the days ahead. Pray for our marriage. Pray for our family traveling here. Pray for Logan. We each need to be constantly covered with prayers of strength, courage, peace and comfort.
Photos captured by Buchanan Photography