Mathew’s leg pain increased significantly through this morning. By the time John arrived, around 1 pm, the doctor had already approved an increase in Dilaudid. Over the course of 24 hours the increase would compare to 50mg morphine (a total over 24 hours). He is on a small/moderate dose of Dilaudid and there is room to increase the dose by quite a bit. Another option is to add other drugs to the mix.
Mathew’s nausea has decreased significantly and he had one shot of Halidol (sp?) in the last almost 24 hours. It turns out the medication is NOT Haldon as I thought, but some drug used in psychiatric wards. Yay. It was discovered one of the other benefits of this drug is to manage nausea hence Mathew getting it.
It was lovely to see Mathew much sharper today. Yesterday his eyes rolled in his sockets; I’ve never seen that before! They twirled and his pupils couldn’t focus (contract/expand) very well. Today his eyes were normal and the sly little fox piped up with one of his infamous remarks during the frequent nurses’ checks. His witty personality peeked through here and there.
Mathew did say, during one of our little conversations, that he “is coming to the end of the line”. Yes that does refer to his remaining life. He and I talked a little more about palliative care and why he was there. He needed reminding that he came for pain control and he agreed it was the best decision. This increased pain today could be the “radiation flare” that happens as a side effect. The doctor pointed out it could also be progression of the disease along his spine. Yeah; wouldn’t want that nasty ol’ cancer to stop growing for a day, would we?
Today marks the first day John and I are implementing a kind of visiting schedule. If Mathew was healthy he would love company to visit and chat. The truth is, he is exhausted and in a lot of pain. He sleeps pretty much 24 hours a day ~ he is dreaming for the first time in quite a while, which pleases him and his doctors. It means he is getting much needed rest. We also understand family and friends wanting to see him. So we decided that today, Friday, visitation will be from 6-8 pm. The lounge is next to Mathew’s room and if there ends up being a queue then visitors can gather in the lounge. Only one or two people will be allowed in at once. The visit will need to be done in a quiet voice because noises bother Mathew a lot. He may or may not talk but probably not. He knows you are there he is just too exhausted to speak. Lucky you, visitor, your talking companions will be either John, myself, or both of us!
This arrangement keeps Mathew’s wellbeing front and foremost and all of us have his best interests’ at heart. Mathew agreed to this with the condition he not have to talk or do anything.
Out of Towners will have special consideration due to travel and time constraints.
This also addresses the need for John and I to focus mostly on Mathew and to keep ourselves energized (ha ha ha). When there are visitors it is hard for us to devote our everything to our son. We need the quiet and space to spend time taking care of Mathew and ourselves. This is another step in the nearly 4 year journey this cancer has taken us and it is the most difficult.
We recognize and thank every one who keeps Mathew in their thoughts. Be it from far away or close by it doesn’t matter; we know he is loved and so does he. Being this ill does not give him energy to think about anything or anyone other than himself and trying to rest. Should Mathew recover some energy then his focus will direct outwards and thoughts of his iPad and family and friends will become important to him again.
The exception to visiting hours are exempted for his Nana and Poppa. They are his grandparents and get special privileges just by being his grandparents.
Thank you everyone for helping us work towards a comfortable and quiet environment for Mathew to get professional and expert help at this most difficult of journeys. I will let you know when (and if) he is able to come home. He is in the best of care and he knows it.
Now, I’m going back for an evening visit before I return home for the night. Please send some spring weather our way. These cold, rainy days are OVER RATED!!