After talking to the doctors they decided to try adding oxycontin to help control the pain, and they had Interventional Radiology do another nerve block in her back (she just came back from that at 9:30). I am really hoping that helps.
One of the things I have been concerned about this last week is that Alisa seems to be...not herself. I don't know quite how to explain it. It is like when you wake up from a vivid dream and for a few moments you are trying to remember what is real and what isn't, or just as you are falling asleep you are dreaming of soccer, you kick the ball and you jerk awake because you actually tried to kick in bed. She seems to be in this state most of the day. It is not very obvious to the nurses, because when she talks to them it isn't way out in left field, just abnormal for Alisa. I have spent plenty of nights (and days) in the hospital with her and this is very different. Even when she was on IL2 (which is notorious for making you...crazy) she was not this loopy.
The challenge is that for me, this is important to get under control, but it does not really concern the doctors (let me be clear, I think they are probably right) they believe it is just the amount of medications she is on, and it will pass once we figure out the right combination of medications.
I know I was joking about it last week, but it stopped being funny. I just want Alisa back. Here are some examples of the things she says and does that may seem normal, but are not for Alisa. There are funnier things, but because they have lost their humor, I can't recall her best ones.
- She gets excited about basketball plays - Alisa will watch basketball, if there is nothing else to do. We have been to some games, she has watched a few on TV with me. But in all the years she has never commented with excitement, "Can they do that, that was a foul." "Whoa, nice dunk!" "ohh, why do they keep missing those?" (4-5 three pointers right in a row.)
- She asks the nurses personal questions - She is normally very personable with the nurses, but in a very tactful, socially acceptable fashion.
- Alisa: How is your daughter?
- Nurse (surprised): My daughter, I do have a daughter...she is...fine. (Alisa has never met this nurse, and I am sure the daughter thing was just a lucky guess)
- Alisa: Good, good
- She doesn't get mad at me for asking questions - Alisa has pretty much handled her own patient care anytime we have been in the hospital. She is constantly asking the doctors and nurses what medications they are giving her, refusing the ones she doesn't want, asking for different ones that serve the same purpose, etc. I learned a while ago that my job is to observe and support whatever she decides. I have asked questions in the past and I get a look that I should hold my tongue. It isn't that she doesn't want me to know, she just prefers that I ask her (after the doctors and nurses have left), so she can explain it in terms that I will understand. It took me a while (almost a week) to realize that she was not controlling her care like she has in the past. Today I started asking some questions (I am sure they were not ideal), she didn't even question me. Good? Nope, I prefer to sit back and observe.
Even as I write this I can see Alisa reading this and critiquing my grammar, punctuation, and entertainment value. Well she can't spell, and I can't write (but I can spell). I think she married me for my good looks not my ability to write, lucky for me.
Right now my hope is that I can talk to Alisa again clear of mind. I hate seeing her in pain, but I also hate that she is not able to laugh with me, tell me how to take care of the boys, remind me not to bother the nurses with my questions, and talk about the future. I hope I don't have to choose one over the other.
Thanks for all your prayers. It really is the best thing you can do.
P.S. I don't know who was praying for us tonight at 7:30, but thanks. At that time is a nurse shift change, our day nurse (Karen) was briefing our night nurse (Jen) on Alisa's situation. I remembered about the nerve block we had discussed with the doctors in the morning (10:00ish) and asked Karen if she had heard anything. She said there were no orders in the system and had not heard anything from IR (interventional radiology), she also thought that the IR doctors did not stay at the hospital on the weekends and typically needed to be paged for emergency situations. She left and we thought we would need to re-address it with the doctors in the morning, and possibly wait till Monday. five minutes later Karen came back in and said they just received a call from IR and they are on their way to get Alisa for the nerve block. Prayers answered. Thanks!