Sammy has had some really good days over the last several days. We are just working on getting a new normal in our lives. One that includes living out of the hospital for all of us. We got some answers, but now we have a million more questions.
Sammy will begin chemo at some point soon. They have not done the spinal tap yet, which plays into what chemo will specifically look like. We have a lot of questions about chemo treatments and what that will ultimately look like for Sammy and for our family. They are talking about doing the spinal tap procedure tomorrow, we will see what really happens. This is the biggie in getting his treatment moving forward. It will show if the cancer has spread or if it is localized to just that one area of his brain.
Sammy currently has a drain in his brain, that removes excess pressure from fluid in his brain. Our bodies are made to absorb this fluid. Because of the mass, his body was prevented from draining and removing this fluid properly. We were hopeful that his body would be able to do this, but this is not happening the way it should. When they try to wean him off the drain, he ends up leaking fluid out of his head at the site where the tube is at. Fluid will take path of least resistance and they want it to be through drain or absorbed by body. His is not doing that as they lessen the drain. They will likely be moving forward with placing a shunt to help keep fluids draining and pressures normal in Sammy’s brain. They will be doing this procedure when they do the spinal tap. The shunt may be a life long thing for Sammy or it could eventually no longer be needed. But for now it is looking like this will be needed for him.
He has had a bit of a difficult adventure with getting blood draws for tests they want to do on his blood. They pulled all his lines out except one over the last couple weeks. They had tried to place a PICC line, but as we previously shared that failed. In the meantime they have been trying to baby the IV in his hand. That finally failed. Sammy had a bit of a difficult morning on Saturday when that happened. The nurse was unable to get a new line in after a bit of a struggle. They called for back up and an IV team came and got it done in seconds. I am thankful it was super easy and they got it done. So Sammy has a new line in place, but they will be placing a broviac line when they do the other procedures. The broviac is a permanent central line that gives them access to the heart, basically. This line is what they need for the ongoing chemo treatments.
In addition to all that, Sammy has had difficulty with having his catheter removed and being able to pee. They removed it a few days ago again. They ended up trying to place it again in a failed attempt. After giving more time, Sammy did end up peeing on the nurse just as she was going to try and place one again. That was an answer to prayer. Sadly, he went another 12 hours without peeing and they deemed to need to place it once again. They failed once again in getting it placed. They had a special team come and get the job done. So they will be keeping it in place for the time being. During the procedures being done they will also have urology come and do a test on him to make sure there is nothing obstructing the way for pee to flow. They just want to rule out any issues, especially since placing one has seemed to be a huge challenge. We are thinking his inability to pee is one of the issues linked to his Posterior Fossa Syndrome. We will hopefully has some more answers in the coming days.
Sammy has been severely affected by Posterior Fossa Syndrome. He has made some baby steps in recovering, which is awesome. But we sense this will be a long journey. We have been able to attempt to get him to communicate using his eyes, by looking at pictures. It is difficult and see it frustrates him at times. He is completely non-verbal currently, and really does not make any purposeful movements with his limbs. Posterior Fossa Syndrome has very few answers moving forward and a whole lot of unknown. He is completely aware and understands when we talk to him, he just is trapped and can do nothing back. We just keep hoping for small steps forward in his recovery of this syndrome.
Sammy has been doing great in all of this. He has his moments, which are fully allowed and understandable. It breaks our hearts, as we can not really do anything for him, except reassure him that we are here and he is safe, that we love him and that we are all working on helping him get better. In the past several days we have been able to get him laughing and see him smile, and light up for various reasons. We hope to continue to be able to help him shine and smile during the rough road ahead.
As we proceed forward a lot of questions have to start being worked through. For myself I have been trying to stay focused in the here and now, but we also have to be ready for the journey ahead. You have to watch the road ahead to know where the bumps are coming. SO as much as I don't want to chase rabbits into their holes and get lost in the “what ifs”, we have to ask those questions to be prepared for the realities of our new life ahead.
In Sammy’s current state he has to have full care. He is immobile, on a feeding tube, has a catheter, and can not support his own body weight while sitting or standing. We have to be prepared for bringing him home in this state. I know that leaving the hospital is not in the near future, but it could happen sooner than we realize. We have to prepare for what that will look like and adjust as he hopefully continues to recover. I have no idea what that will even look like. The truth is we need to know what we have to be prepared for moving forward. As we want to bring him home. He wants to go home. Our life is just one big unknown right now.
PRAY for our worries. PRAY for us to keep calm and at peace with each new day and new adventure. PRAY we chase the paths that we need to know and not get trapped falling in rabbit holes as we prepare to move forward in this journey. PRAY for total healing of our son, Sammy. PRAY for every nurse, doctor, staff member that lays their hands on Sammy. PRAY for the plans we have laid ahead for his treatment. PRAY we can stay focused on the real stuff and not be distracted by the small stuff. PRAY for Charles and I. For our marriage. For our family. For our younger son, Logan. PRAY for wisdom as we decide Charles’ return to work and the logistics of finding care for Logan. PRAY we stay healthy and keep Sam healthy. PRAY for the doctors as they prepare to potentially do these other surgeries on Monday for Sammy.
