Concerns

I've spent this entire hospital stay going from one issue with my health to the next. Thing is, that was OK. I had a great team of doctors that understood me enough to work with me. I was real nervous about the teams switching over, things don't get passed over correctly, they possibly change the entire plan I was comfortable with etc. I let people know my fears. Today the team switched. Every last fear and then some were realized. The Intern, is an arrogant little bitch who after being told that my husband wanted to speak with her and her accepting, came back into the room 5 mins before he gets there (going out of his way, mind you) and tells me that "something came up" and she can't talk to him tonight. She suggests other times, all on the phone (which he hates) and not in person. All were times that I had previously explained to her were times he worked, was doing something else, taking care of the kids etc. When I suggested that this was awfully convenient, she tells me "I didn't even have to let you know this, I could have just gone and not been available." Well, yes I'm sorry yes you did have to tell me. You were canceling an appointment to speak to the spouse of one of your patients.
   It's all over now, I've asked to be transferred to a new team of doctors and explained to the nurses that I absolutely will not work with such rudeness. Her plan if she has her way is to get a graft in me (which she is convinced is accessible immediately and the vascular surgeons verified with me for a third time that it indeed is not) get me transferred from a heparin drip and changed over to pill form blood thinners and once my blood is therapeutic send me home. No testing for transplant. No nothing working towards that reality.
   Add on top of this that the catheter in my leg is an issue. Say they even find a vein that's good enough (still a big question if they will tomorrow) and the graft isn't usable for a month, this leg catheter causes me so much pain right now that I am regularly crying in pain and require high amounts of pain meds to make it bearable. She's said nothing about this issue. I've brought it up many times today. I'm not getting the answers I need, and I'm not pleased. If I wind up moving on further and this keeps happening tomorrow and/or I don't get transferred to a new team I am going to have to use Condition H (Which is the hospitals lifeline for patients and their family when they think somethings not right and no one else is doing a damned thing about it) I'm not 100% how it works but I will be asking my nurse (who I adore tonight) tonight so I have the information.
   As it stands...Looks like I'll be back home in 2-8 days.

Oh; PS to Dr. Amanda who said she would check this blog to see how things went- "You were so wrong about me getting along with this rude, superficial and ill mannered person who seems to think she's going to be a doctor some day. She shouldn't be dealing with people at all in any way. Research maybe...Administration would be even better..then she can be rude and people will just nod and smile since Admin. is filled with hot air and nonsense.

When do I get a break?

   I am in the hospital again, it's been almost a week now. Same old story...clotted catheter and infected site. They are actually doing things that make sense this time and giving me blood thinners in hopes that I won't keep clotting off my lines.
   The most frustrating thing though? I'm likely to be in here a good long while because of pre-transplant testing. So, we had to figure out a long term solution for the kids. Rob has to work, and I obviously can't watch them while I'm in the hospital. We wound up hiring someone, a young woman with 2 of her own kids and we thought everything was going to be just fine. Instead, she sends me a text message (not even the courtesy of a phone call) to tell me she has surgery tomorrow morning. Now, I know she's ill and all that. However, I seriously doubt that she has surgery tomorrow. Or at least that she didn't know she did before accepting this assignment. First, it's a Sunday. No doctor in the world bothers with scheduling someone for Sunday unless they have been admitted.
   SO, now we are stuck bringing the kids to their Godmothers, which we have to walk to because we have no car uphill and over 3 miles to get to, then the 6 miles to work and repeat on the way home. We don't possess a car right now and I do not have a license and my DH's is suspended. I am lost and bewildered as to how someone could f847ing do this. What happened to responsibility?

I am so frusterated I could scream

   It's hard enough being a stay at home Mom. Lots of things fall to you exclusively. I'm not bitching,,I Live being at home with my babies. however, I do wish I could sometimes maybe get some where people have said they were. Now, I am not speaking of my Roommate T who has been an absolute wonder when it comes to making sure we have what we need time wise, and also house wise. He's put in countless hours watching the kids so that I can go to dialysis. What I am complaining about is EVERYONE ELSE who has said "Oh sure, you can count on me..just email, FB mail call whatever" and when when I do...when I have Aleksey's Child Development Unit appointment..which I waited 3 stinking months to be able to schedule...No one has called me back. No one has written. Nothing. This appointment is somewhere I can't eve get to by bus..so eve if I prevailed upon my awesome roommate (which is the last thing I want to do right now, He's done so much already) I couldn't get there.

   Unlike most others I know, we don't have any family out here to help out. We don't have the money to invest in a referenced babysitter (even if my kitchen was fully working..I won't have a stranger come into my home for anything until that's done) and day-care is out of the question until the state gets their collective thumbs outta their rears so I can get a childcare waiver so I can MAYBE do the doctors appointments necessary for my transplant without having to bring both kids with me.

   I feel so damned alone sometimes when it comes to this, I have my husband working his tail end off to make sure we have the money for what we need, and I'm working my tail off to see the kids taken care of and the house taken care of. I don't have a clone although I wish I did and it seems like the promises of friends isn't worth shit.