When Derek was first injured, I was back in the role of primary caregiver. I was making the decisions, because he was unable to do so. Then he got a little better, and he was able to take part in his care, but I was still primary. I had all of the information about his medications, surgeries, procedures, doctors, nurses, etc. Now he is even better, but is he ready to take it himself? Can he remember all of the information necessary?
He always had control of his own room as to who visited and when. Now he is making the medical decisions, but I am there to voice my concerns and questions and to help guide him
It's hard to let go. It's hard to give him that control. It is in my nature to want to take care of him and protect him. I saw how sick and fragile he was, and I am afraid that he will push it an hurt himself again. He is so impulsive! "I want it, I want it now, I will not wait." I am afraid that this will get him hurt.... again.
I also have reservations right now because I feel that my questions and concerns are being "pooh poohed." I ask questions of his PT and I get round about, fluffy answers. She doesn't address my concerns. Dr. Kim is great at addressing my concerns, and so is Dr. Sam, the new resident. I like the OT and how he addresses my concerns. Derek gets aggravated with me because he wants me to let it go, but I cannot. I need the answers so that I can relax. I am already not sleeping at night, and I have so many concerns about life in general. The least they can do is address my concerns and put my fears to rest.
So, what did I do? I complained. I voiced my concerns loud and strong today. I had voiced them before, but nothing came of it. Today, I did not shut up until I had action. We are supposed to have a meeting on Monday to address the criteria for outpatient, Derek's progress, etc. My only concern with this is that Dr. Kim is away. She knows Derek better than anyone else who is presently on his service. I wish Dr. Perdue could be there, or at least Diego or Bograd. The doctors who are here now are not Derek's primary doctors. He has had so much going on, I would feel more comfortable if at least one doctor who has been on Derek's case from the beginning was there for this meeting. We will see how it goes.
Derek had hoped to get his colosomy reversed before he goes outpatient, but that is not going to happen. They need him to be more stabile and secure before that happens. Given his long history of abdominal difficulties, this calms me. I am glad that they are being cautious.
We had wanted to go to dinner and a movie tonight, since I didn't see anyone to sign up for the Aleethia dinner, but Derek was not up for it. Maybe tomorrow!
Some amazing news today is the phosphate level is down to 3! It had been 7, which is very dangerous. Now that it is 3, super normal level, and has been good for a while, there is no more low phosphate diet! Woot! We told him it wouldn't be forever. We are not going to let him go crazy with cookies, soda, candy, etc., because we don't want it to get out of control again, AND it's just not healthy. Derek will have to watch his weight for the rest of his life. We were told that extra weight will make it harder for him to transfer and walk on his prosthetics.
Another bit of good news is he is cleared for weight bearing on the stump and can be molded for his prosthetics! We are closer to those first steps!
And Derek has been in rare form. His little buddy is with him for the weekend, his little brother Sean. They are having movie nights and hanging out together. His nurse came in tonight, and he tried ot impress her with some Spanish. He said, "I'm umero numno!" He meant to say, "I'm numero uno!" We had a good laugh over that.
So we continue to heal. We continue to walk beside Derek as he climbs to glory. He is making it. He will not give up.