August 7, 2009 (III)

he had back in April/May. He had dialysis the night before the appointment and came home and went to sleep as he usually does. I woke him up to go to the appointment and he complained he was not feeling well. This is also usual after dialysis - so I pushed to the point we had a big fight - but got him out the door. Whe...n he got to Emory Midtown (that's where the Drs office is) he pulled up in front of the parking deck and just about passed out. Security came over - pulled him out of the car and took him around to the ER. Apparently dialysis had taken an extra kilogram of fluid off - the result of this is that the blood pressure goes dangerously low. He ended up missing the doctor's appointment and staying in the hospital overnigh for them to get his BP back to normal. The addtional hospital bill - big thanks to dialysis for the goof up - and never mind the stress and duress - were two things we really didn't need. Jumping ahead to July 29th dialysis session Scott woke up Monday morning to realize they had not taken all the fluid off that they discussed the previous evening. It's a joint effort between patient and the tech. So he had an addtional 3 kilos of fluid on him plus whatever he would put on prior to his return on the next Tuesday night. Normally no big deal...except tha...t before he returned to dialysis Scott was scheduled to take the Pulmonary Stress test and having an extra 3 to 6 kilos of fluid on him might in fact mess up the results of the test! ARGH!!!!! I spent Monday afternoon on the phone with his current clinic, his previous clinic as well as his nephrologists trying desperately to see if any of them could fit him in before his test on Tuesday. The answer was an resounding no. Meltdown management is a course I think I could tech at this point in my life. So we called the pulmonary office to reschedule (they did confirm that the extra fluid would skew the test results). Luckily the were able to get Scott resceduled for that Friday...just three days later...just three more days to wait. Thanks Dialysis!! That was last Friday. We went, Scott took the test and we were told the results would be in the Emory records system (they're computerized so any Emory office can pull ALL of Scott's records at any time - LOVE THIS). The techs that administered the test said that Scott did really great and the results of the test were great results. So Monday...no news. Tuesday no news, Scott asked if we should call. I suggested we wait till Wednesday. Wednesday afternoon the transplant team called to let us know that the test results still had not been posted. Okay, should we call...would that help. We tried Thursday to call and we couldn't get through to the right person. This morning the transplant coordinator called to let us know they STILL did not have the results. It's been another week!! ARGH. I did get in touch with the correct person this morning and she told me that the results of the test had to be retranscribed and then signed off on by a doctor. She promised though that it would be completed today and faxed over to the transplant coordinator. So that's kinda where we are today. A few other bumps along the road during the past three weeks. Because we are so close (at lea...st we keep trying to tell ourselves that) I've not picked up any freelance work. Our power company notified us that our power bill will be increasing $60 a month starting in August. Well I can certianly tell you that the extra $60 is not &60 we have right now to budget in. Thye won't work with us at all - oddly all of the utility companies offer no programs for disabled people - which I find a true shame. I will be tackling this once we're on the other side of this. Another incident that happend just the other day was the city notified us that the grass was getting to long in our front yard. Well the last thing I want to do with it 90 degrees outside is cut the grass. We have a neighbor kid who wants to cut it for us...but we don't have the money to pay him. I actually feel worse for him because I remember being his age and wanting to earn the money. On the better side of everything we've had a month of parents visits. Scott's parents were here for about a week with us and then right behind them being here my Mom has been here for a week. Always great to get to spend time with them when we can :)


So this is why I've not been posting the past four weeks...I hope everyone understands.