Hey all. So, lets see, what is new? Yesterday my mom came up and I went to York. I had to get my picture taken...remember I tried to a couple of weeks ago but the DMV is closed on Mondays. Not just holiday Mondays, ALL Mondays. Anyway, I got my picture taken yesterday then I had some time to kill before I had to go BACK to the DMV for my "special points test". I was freezing because I had no coat...wasn't too cold when we came up here on November 16th. I went home and got my coat then met dad for lunch. Actually I ate, he hung around..he had just been there and eaten! One of the very nice ladies working there bought me my lunch!! Thanks! After I ate I went back to the dmv. My appointment was for 2pm. The paper said get there 15 mins early. I got there 20 mins early. When they finally took me back to a little room others starting streaming in. The test is 20 questions, you can get 6 wrong...yes I said 6...I thought the guy was joking..nope. It took me 6 mins to finish the test and I got none wrong. I was finished and leaving and people were still arriving. Telling time seemed to be an issue , the guy giving the test was very patient. I wanted to scream and I don't work there. If you want to feel like a genius hang out at the DMV for a little bit. Where do these people come from? Why are they all at the DMV? So that was my fun day at the DMV. My license is now secure....if I can stay under the speed limit for a year....oh god a whole year. I rushed back here (staying close to the speed limit) and all was well. Mom had it under control of course.
Today was NOT a fun day. We had waited until today to have Jed's port needle changed for 2 reasons. First I was not here on Thurs and either was Amanda. Amanda was here today. Jed loves her and trusts her. We love most of our nurses but there are some we just feel closer to. I know you all know how Jed is about his port..it is always a huge drama. Having amanda up here has eliminated a lot of the terror he has. When our nurse walked in this morning it was NOT Amanda. I understand that they have to assign nurses according to work load so I was not all that worried about it. Amanda has done the needle change quite a few times and has not always been our nurse. Whoever we have always just says "not a problem, if Amanda makes Jed comfortable I will get her". Not the nurse we had this morning. She took it very personally when She came in with all the needle change stuff and Jed asked for Amanda. She told him it's me or the IV team. WTF. For the 1st time in almost 8 yrs I went to the charge nurse. Now this nurse we had, she is very competent and capable but this had NOTHING to do with her and her abilities. If her reaction had been more professional and more centered on Jed and not her ego I would not have gotten as upset as I did. He reaction was what set me off. It was unfair to Jed and really just mean. After apologies from her and some discussion she did end up doing the change later in the day but all the crap we went through was completely unnecessary. We used to go to clinic, now evidently we are not allowed to do that and we were told that none of the nurses would come to Jed. I know they are busy. So anyway, I was fed a lot of BS today about scheduling and so on. Jed was calmer and did ok so I went along with the BS I was fed. I don't want to make his time up here harder by bitching. There is a fine line. So the day was filled with drama and tension ....completely unnecessary. This nurse loves jed, I know that and he usually really likes her so I am trying to keep my feelings out of this. He seemed to forgive her, he knew when she was saying crap that was untrue but he let her slide and they talked about stuff that he likes and he was ok. I took my cue from him....but there is only so far I am willing to go and I hope now she knows that. She is the ONLY nurse that I seem to have an issue with. This is Jed's ONE main issue, why not make it as trauma free as possible, why make is so much harder?
Anyway, we made it through that drama and then he had a reaction to the IVIG he was getting. It can cause severe bone ache and chills....it did. He was also due for morphine. I asked her to stop the IVIG and give his morphine. First she told Jed she could not stop it and he could take the oral...he told her that is not strong enough and will not help..she said 'well it's better than nothing". She left the room and I followed her, many people were around when I said "how long is this going to run? He is in real pain, this is not a ploy to get morphine" . She did say then, 'I'm going to stop it and give his morphine and then slow the rate down". Now why not say that to begin with? or say, "Jed I will go find out right now how we can stop this pain". She did take care of it but her 1st reaction was... take the oral or nothing. I know I am tired and sleeping 2-4 hrs a night doesn't help my disposition but today sucked....and it really didn't have too. All the explanations I got I completely understand and also know that some of it was just plain bs. Jed is sleeping comfortably now and we had one of my fave nurses from 7-11, which helped me calm down. i am not sure who is up next, there are a couple with the same name!
Tomorrow is a new day....if there is an issue I will probably not be nice...I am almost to my breaking point. The only thing holding me in check is that I am following Jed's lead on this. I also don't want the personality conflict that I seem to have compromise Jed's care up here.
I have a raging headache and I really would like to drink a couple of my brother's special bushwackers and then sleep for a solid 12 hrs or so. That will be a long time coming..that's ok though we have other stuff to do right now!
OOO, carol is here, she is DEFINITELY one of my faves....oh, she is just helping out our nurse, but I don't know who that is yet! I hate weekends up here.
Now that I have whined and complained and moaned and rambled I have to go!
I just found out who our nurse is. We had her last night and she is great, I actually slept about 4 hrs! Glad she is here tonight.
Love Jed and Kristin