The Real Test of Our Patience.

This week was what I would call a true test of my patience. B has been using the morphine pump for just over 1 week. This pump was introduced to B to bring relief and up until yesterday it has been a real pain in the dupa. With B still having extreme pain, the pain pump has been working overtime. And since the pump is working so hard the battery life of the pain pump is very short. And for some reason the pump feels compelled to shut down in the middle of every night. So this means that I am running up and down the stairs every night to get batteries for the pump. I guess you could say there is a real learning curve, and we now bring batteries up to the room every night, but it is highly inconvenient. There is nothing worse then getting woken up with a loud buzzing alarm every night. And then imagine both B and I trying to figure what the heck is going on. We end up in a haze for about 5 minutes before figuring out exactly what is going on. And I am really mean when I get scared out of my sleep. Mrs. Muttz loves her sleep and I am a true "B" when I get torn out of a good ol REMming session. I can't help myself, however I am less than a loving wife that is for sure.

Not only that every time there is a change in the dose of the morphine, which has been almost every day, an at home RN has to come out to the house. All three RN's are really really nice, but it seems like everything is a big production. There has not been 1 time where any one RN has been at the house any less than 2 hours. The first time out, the pharmacy sent a pump that was dead, so the pump would not prime. The RN was on the phone for over 1 hour with the pharmacy and then we had to wait for a pack of batteries to arrive. The next time she was here she brought a RN in training, because she is going on vacation. Well she let the new RN put in a new line and a new morphine bag, and she ended up doing it wrong and as a result the entire morphine bag was trashed and the pharmacy had to deliver new supplies and what was supposed to be a simple 5 minute job turned into a 3 hour ordeal. In addition, B was without morphine that entire time! I really can't believe that I haven't blow a gasket. I believe that everyone should know how to do their job....so just be honest. It really makes me mad when people who don't know what they're doing act like they do. Just say you don't know what you are doing. I would rather you say you don't know than act like you do. Especially when you are dealing with people with serious illnesses. I mean come on....what a freaking joke.

In addition B has been feeling pretty bad, well enough of the sugar coating, he feels like shit! He has had some off the chart pain attacks that have ended up with some late calls into the Dr's office and a ton of debating as whether or not to take him into the ER. I actually ended up yelling so loud one night it scared B right out of bed. I never yell. I don't even think I know how to yell, but something deep and dark inside came out. I was just so tired, and so scared, and so frustrated because B was suffering so much. He was yelling and had pain rated at an 11 out of 10 on the pain scale. B actually said that the pain was so bad he could chew through his leg...who says that except Hannibal Lecter? His heart rate was through the roof and he was sweating like Kobe Bryant in the 4th quarter of game 7 in the NBA playoffs. It is torture seeing someone you love lay there helpless on the bed. Talk about a bad month......more like a bad year.

And since I am no longer sugar coating, you should all know that B is considering using a wheelchair. That should say it all. Those of you who are lucky enough to know B personally, know that a wheelchair is something B would only resort to if he absolutely had to. Well he is resorting, or at least considering. At this point it is hard for him to get from the house to the car. And then from the car to class. What a joke right? So the truth is B is not OK. We are not OK. B is scheduled to meet with Dr. # 4 and # 11 this week. And he continues to undergo radiation every day for the next 2 weeks. He is having radiation on his neck/ rib/ sternum as well as his leg. From what I can gather it is quite difficult radiating the spot in his leg due to its location and due to the fact that it is a painful position for B to maintain. It is our hope that the radiation helps with some of the pain so that the morphine pump can focus on treating the right leg. B has resorted to shuffling around and it is becoming more difficult for him to lift his right leg off the ground. He actually has chaffing marks on the back of his right leg. This has been caused by B constantly lifting his leg up and down since he no longer has the strength in his leg to do it without help from his upper body. Hard to imagine.

We are still trying to maintain some sort of normalcy in our lives, but it is pretty hard. We headed to the EL last weekend for some tailgating and it was fun but different. B had a hard time staying awake and we had to be sure to keep him dry since the last thing this kid needs is to catch a cold. I know we had a good time, but I also know that B over did it! Right now what B needs most is rest so I think we are going to have to take a step back and just work hard on getting him better.

Sorry that we don't have better news. We are still working on getting in for a second opinion and we will keep you updated as the info comes in. Looking forward to watching the MSU vs. U of M game.....and let me be the first to say.....GO STATE!!!!!!!!!!!!!!