Back From The Hospital Again

After 5 days I am FINALLY home from the hospital - hooray!! Thanks so much for all the calls and comments that you have all posted...you will never know how mcch it means to me. The biggest Thanks of all go out to Karol Paduch for being such a great friend and especially Neva Ganun & her husband who helped in a HUGE way to get me the correct care. I am going to post about my latest Hospital Stay, but it will be in two parts since I just gell asleep while I was typing this first part (below). Excuse any typos, the nerves in my brain ato my fingers aren't working correctly and I"ll explain that in a following post (I've re-read what I"ve written several times and don't have the strength to proof read any more).

I was able to get a ride to Jordon hospital in Plymouth by my mother-in-law Arlene which was a great relief. Once the admitting nurse heard I had recently had brain surgery I was instantly admitted and I was amazed at how fast every thing progressed (bloodwork, CT scan, IVs, etc). My mom works in plymouth, just a mile from the hospital so she came by as soon as she was out of work. The doctors & nurses at Jordan were wonderful!! After a consult with the folks at Brigham and Woman's Hospital they decided that I needed to be up there so I was transferred by ambulance up to Boston, I actually had a fun ambulance ride since the 2 EMTs that drove me loved to crack jokes and they had my same sarcastic sense of humor LOL. Once in the emergency room at Brigham & Womans Hospital (B&GH) I had great nurses but lowsy (sp?) doctors, except for two, who I'll name later)! They kept saying that nothing was wrong with me and to go home, even though I couldn't open my mouth at all, my gums were totally inflamed, I was seeing double all the time and had a bit of vertigo. At 1:30 am I actually had an intern neurosurgeon who came to my bed and said I HAD TO GO HOME! I disagreed and said I wish he could be inside my body so he could see what I felt like. At that point he said that I should be glad I didn't have puss in my brain and I was being silly. I asked him once again what was causing the problems and he said that I DID have some thing going on and they knew it but it wasn't life threatening so I should just go home. I asked what it was that they had found and he refused to tell me. During this time not one doctor had actually examined me or asked to look at my mouth. This doctor, and the two others that had come into the room and just stood above me while I lay in the bed and said "You incision looks fine and there is nothing wrong". When the doctors had left I didn't know what to do. I knew that there was something wrong and I didn't feel well but no one would listen. I also knew from some of the emails and comments I had received that I had a right to fight for myself to get good health care and I want to thank those of you that have said that sometimes you just can't listen to the doctors when they say nothing is wrong. I also knew that if they released me at 1:30am from the hospital I had no where to go since I was 1 1/2 hours away from home. So I layed in bed and felt sorry for myself for a bit, not knowing what to do. Finally my nurse, Marlene came in and noticed how down I was and told me that she thought that I had been treated horribly and she was going to take care of that. She got me some pain relievers (Yea Morphine), got me a more comfortable bed since I was on a bed that didn't have a real mattress, and then got me warmed blankets :-) I can't tell you how wonderful it felt to have someone listen to me and understand that there was a problem! Shortly after that Marlene came in with a new armband and said that she had ordered an xray of my mouth and jaw and that even thoug she was just a nurse (and not supossed to do this) she had admitted me to the hospital so I was not going home, and as soon as they had a room on the Neuro ward (10th floor) that I would be sent up there. Unfortunately by that time it was already an hour after Marlene was suposded to be off duty so I had another nures, Zada. Zada was very understafed it seemed and they had several trama and GSWs come in so I didn't see anyone for about 3 hours. When I finally saw someone they had come to move me and I thought I was finally going up to the 10th floor...boy was I wrong. They basically kicked me out of the room in the ER and put me in the hallway near the door to wait. Well everytime the door opened there was a mass of Kayoss (sp?). cold wind, and noise. There was also VERY bright lights and one of the problems I was having dealt with bright lights (in my house I have put 60 watt bulbs on dimmer switches). I asked for a nurse and f-i-n-a-l-y some one bothered to come by to see what I wanted. I asked for some releif from the glare and was given a hand towel to put over my face :-( So I started to feel badly again; alone in the ER of B&WH having to fight with doctors (which is so beyond how I usually do things), in a hallway with prisoners being brought in that were spewing foul language but getting awesome care, and basically feeling like I was a nothing that didn't matter and was just a bother to them. Finally Zada came by as I was silently crying (only out of my right eye which was very strange) and said "Oh I'm so sorry I saw you there when I cam back from my dinner and remembered that you were supposed to be transfered. They had a bed ready for you hours ago...oops. sorry" I hope she enjoyed her food because I was in excruciating pain from the noise and bright lights, hadn't been able to eat in 4 days, not to mention that I was starting to feel like I just didn't matter. After that I was moved up to the 10th floor (10D room72).

I'm going to finish my story worromot (oops, that should be tomorrow but I"ve been spelling a bunch of words backwards for some reason, without even realizing it, and that is really weird!). Until then just know that they have finally found out what is happening and it has to do with my nerve endings. I do feel a slight bit better and tht should improve each day. I'll write more later.

Sue