Update now that I can type!
Meds got sorted yesterday. At midnight Friday after I had what little pain meds they could give me in my system I sent an email off to my "contact". Honestly I was hurting so much I don't remember what I said but I know I just asked for him to check in with me ASAP and that I had a little trouble following a procedure at the cath lab. I didn't give any deets about the medicine thing etc to him, figured better to explain in person. However I did complain to all the night nurses and word must have reached someone because around 10 am yesterday a guy who claimed he was a cardiologist working with the EP team through the weekend came to talk to me about getting me better pain control. I had not made any direct requests to talk to someone about the pain control just had vented about not receiving post op/recovery pain meds or treatment. I think I must have been clearly in pain two my two nurses all night who could only give me a small amount of meds of an old order might have pulled some strings. Anyways the guy was apologetic and nice and said his first control was to get my pain back under control, he asked what we did for my last surgery and I told him, also mentioning it was in the EMR if he wanted to confirm, not only were those orders placed in 20 mins but my nurse came in five min later with a "extra big dose" of something stronger that the doctor ordered as a "head start". An hour later when they went to pull the PICC line my nurse called to see if she could start administering the other meds or if it was too soon and he said go ahead and give her a big IV dose of the extra strong stuff. So I spent must of yesterday pretty loopy, the extra strong stuff isn't really stronger for me but it makes me very dopey. So I didn't even start my morphine regimine till around 6pm because I didn't want to be so out of it. Anyways, I think my point in telling the story is that I believe this was somebody trying to "make up" for what had happened. I talked to the two other doctors from the EP team who were part of the decision on the surgery but had not stayed through the procedure they were going to find out who the particular staff member was and find out why I wasn't given post op care. They all at least pretended to agree with me that it shouldn't have happened.
It turns out the PICC line somehow got twisted into a knot inside my vein during the procedure. They said it was likely due to my "small frame and and small anatomy". That there was not enough room to run the pacer wire and the PICC down the same vein. But it never was explained how the knot happend. Because of the knot being in there for 12 hours I wasn't getting as much of my milrinone drip as I should have and I started getting blue fingers and toes again. They have still been blue off and on today but getting better now that they made a new midline until I can get into interventional radiology to have a subclavian PICC placed. One other note about the knot, they also said it is highly likely the extreme post op pain I suffered from may have been enhanced by that knot filling out the vein and pushing against nerves, it was quite painful when they pulled it out and did feel better once it was gone.
I have gained 10 lbs of water weight all in my lower extremities since they stopped my furosemide last Tuesday. I convinced the weekend staff to give me an IV dose of lasix which I thought was helping but my weight this am showed I actually gained not lost. I complained some more to the docs covering for the HF team through the weekend, they tried to tell me again they can't get the fluids of because my internal pressures had been too low, then he used his manic want to use the jugular vein to estimate my pressure and changed his mind because apparently it was now slightly high, he put me on a half dose of my oral furosemide, I have barely peed at all an it wore off hours ago.
I am praying my actual doctors are back around tomorrow and not the weekenders who don't know me or my case, it made for a very stressful weekend! Even the weekend case manager was messing things up. Everyone seems confused and nobody knows all the details of my case. They also do not know me and I am getting prejudged bu some of them I believe which isn't helping.
Hopefully tomorrow will be better, and maybe big dog will get my email and help straighten out some issues. Right now I just feel physically and emotionally abused, and very alone.
The fiancé was in bad spirits yesterday, he brought me my laptop got mad and left. I barely talked to him today.
I did however have a fun night with a nurse I had the first night back from surgery as well. He had a slow night and so he just hung out with me since I couldn't sleep. We had a good time and the night passed quickly.
I do have a good team of doctors here, this is pretty normal stuff for any commercial hospital in the US. The doctors can be great but policies, paperwork, human errors by low level staff, and understaffing on weekends ALWAYS causes problems (one of the reasons I wanted home before the weekend).
It is also unfortunate that in the states as soon as you sign a consent for treatment you are also agreeing to pay whatever they charge. Luckily insurance covers a large portion of this but we pay for our insurance, so mistakes cost our insurance money which raises every bodies premiums, it is a real bummer.
I am rambling again, I posted some post op pics the abdominal one looks awful it's swollen bigger than it did when they swapped in the crt-p in November. I thought since the pocket was empty it would start to shrink not get bigger. My left shoulder and boob are HUGE I am so small and a crt-D can so big, now I just have to pray I get approved for listing then get a heart so it can come out! I am a bit upset at the quality on the incisions (it looks as if a two year old did them). If I get my new heart I may have to get some plastic surgery to have things cleaned up :(