Yesterday morning at 6 I woke Dave up to move him around and give him his meds, we fell back to sleep and Owen said goodbye at 7:30 when he left for school and Dave was still sleeping. I drifted back to sleep and at 7:45 I woke up to Dave being in obvious pain but I couldn't get him to respond to me. He was moving around and making noise but was unable to talk so I made a couple of calls and got Rose to come over and the Home Health nurse on her way. Tim's mom is also a nurse and called me while I was waiting which really really helped me. She told me I needed to bypass home health and go straight to hospice so when the nurse got here that's what we did and the hospice nurse and social worker came out within a couple hours.
Since all the meds we got were pill form and David was in no condition to swallow anything the hospice nurse ordered liquid pain meds for us. A box of stuff was delivered and starting at 1pm he's been on Morphine for pain and Ativan for seizures, he's also still on steroids to keep any inflammation down. To my count he had at least 5 small, scary but nonviolent seizures but those stopped after giving him a good dose of Ativan.
It was very obvious all day that he could hear us even if he couldn't respond so we have just been talking to him. The nurse in the morning said he probably was pretty close to the end but as the day wore on into night he started being able to respond a little bit. Mostly just ya and no and slight head nods but it was encouraging.
Rose spent the night (worst reason for a slumber party imo) and we set alarms so we could be sure to stay on top of the dosing and moving him around to avoid bedsores. He slept so well all night! We moved the "hospital bed" up next to my side of the bed so I could have my hand on him all night. Every time we had to wake him up he seemed a little more with it. Early on when I would tell him I was giving him morphine he would bat me away and push his lips together but by this morning when I gave him the morphine he would help me and he even asked for it at some point. I think we may have finally gotten ahead of the pain.
Around 4 am he even asked for a drink of water, big difference from the man that woke me up yesterday because he was making sounds of pain. I was nervous because I didn't want him to choke on the water but I moved the bed up so he was mostly sitting and I can't very well deny a man of water!
I'm not really sure what happened. I talked to his neurologist's PA and she said that if it was the tumor he wouldn't have use of his arms which he does. I wondered if he had a stroke or something but he didn't have any classic stroke symptoms except that he couldn't talk. After everything we went through yesterday trying to find the right dose of the meds we have available to us I'm wondering if he was just in so much pain that he went into shock of some sort that triggered the seizures and made everything go down hill.
At this point he's on a good dose (not a huge dose but high for him) of morphine, .5ml every 1-2 hours, and he's super super groggy but he is talking a little more and said, "I love you" which is more words than he said at once coherently all day yesterday. We might have the dose a little high and now that we have the pain under control maybe we can lower that a little but we'll wait for the nurse to come before we adjust that, for right now I'm just thrilled that he isn't in any pain and that he's sleeping well and breathing well.
We had so many people here yesterday and Rose has been here basically since she woke up yesterday. I'm so grateful we have such amazing friends and family.
I'm hoping as the day progresses so will David. We're looking for that sweet spot between comfortable and lucid.