Yesterday was a very long day at Stanford. Tin Man had a cardiology appointment and we also met with the social worker and the surgeon. We were prepared for the doctor to be behind schedule because it was the first clinic after vacation. We joke about him being so far behind, but I can't complain. He comes in and asks how things are going. Not just with Tin Man, but he asks about me and the kids. When he explains things he makes sure we understand what he's talking about and makes sure we don't leave the room if we still don't understand.
Yesterday we went over the results from the heart cath Tin Man had done in December. The pressures in the lungs look great, are actually better than they have been before. However the heart function has decreased. So doctor wants to do another exercise test to see where he's had now compared to 2 years ago.
We were also told that they are bringing a kidney doctor onto the team. Tin Man's creatinine levels were 2.3. He said they would prefer anything below 1.7, but don't worry until they reach 2.0 or higher. So now we wait for the call to schedule that appointment and the exercise test.
Warrior and Sugar Pea went with us to interview the suregon. Warrior is doing his graduation project on transplants and he had to interview someone who has first hand knowledge. Who better than the surgeon thats been doing it longer than Tin Man's been alive.
Sugar Pea had her own set of questions to ask. Like how they can make a normal healthy heart fit where he daddy's heart is since his is "all deformed and just not normal" (her words). It was pretty interesting to here his explanation.
We also met with our latest social worker. This was social worker #8 or 9 and she told us that she is just temporary. So we can expect to meet with a new one soon. This is the only complaint I've had about this whole process. We haven't met with the same person 2 times in a row. Needless to say when we have questions, getting answers is tough.
This social worker was helpful as far as giving us ideas on who to talk to and what to research as far as insurance ideas and what we need to look into to keep Tin Man insured and on the waiting list if his employer does decide to do away with health insurance completely.
Kids go back to school on Monday, and we have several fundraisers in the works, and now researching insurance options.
I need to clone myself so I can do 2 or 3 things at the same time.