Ethan had his hematology appointment last week. That went really well. His hematologist works closely with his cardiologist, so they have plans to repeat some of Ethan's bloodwork to make sure things look good but she said she was not concerned with any of the results.
I spent some time last week trying to trace down what the hold up was with the insurance. I left several messages, explained what was happening to several people and got transferred several times. It is so convenient when working a full time and part time job. (SARCASM!) I spent another bit of time yesterday trying to somehow get to the bottom of what the hold up was.....and finally got an answer of who to contact. Ahhhhhh....found the desk our paper work was sitting on. The problem was, I couldn't contact that person directly.
Since a transplant requires you to have a team of people to help, I left a message with one of the coordinators yesterday afternoon. I was disappointed but not discouraged, when we went to the follow-up cardiology appointment today.
Ethan's cardiologist, Ethan and I came up with a plan. Ethan is going to be admitted at some point next week. They would put in a pic line which is a really long IV catheter and started on a medication to help relax the muscles inside of his blood vessels to help them widen. This helps with the pressure and allows the blood to flow better. On this medication, he would need to be monitored closely. This would allow for a transfer by ambulance to NYC. He would be accompanied by a driver, nurse and respiratory specialist on board. I would be there too.
Ethan's remark about the 6 hour long ambulance ride: "Awe that sucks. We won't be able to just stop where we want and eat somewhere." I laughed. Of course he would be worried about eating. We then laughed at the absurdity of demanding the driver to have the lights flashing the whole way and getting a super long ride going 100 mph to NYC.
Once in NYC, he will start the evaluation process, while staying in the hospital and get his name on the transplant list. The whole process should last about 2 weeks or so. Ethan's face fell when he heard that. His shoulders rolled forward and he slumped over in disappointment.
Ethan's cardiologist was going to call the cardiologist in NYC and they were going to coordinate schedules so that all this could happen. Ethan would need to be seen by many people once there as well as go through additional testing.
Ethan is not overly happy about the plan but is going to do what he has to. We have already contacted a tech coordinator at the hospital as well as the High school because the last time he was in the hospital he was unable to access zoom to attend his online classes.
We left the hospital with the plan in place. We will hear back tomorrow from both places.
We left the office. We weren't even out of the hospital when I received a call from an "unknown caller". UGH! Telemarketer. Then I noticed that the area code was NYC. I answered. It was Ethan's nurse. She told me that last night they had received official word, after my messages, that Ethan's insurance negotiations were approved and we were ready to rock.
I tested Ethan's cardiologist right away. He said he was going to call Ethan's NYC doctor to discuss. Turns out, because Ethan is feeling alright now, we only have to do the 2 day evaluation. YEAH! He won't be admitted at all. He can stay at a hotel with us. So we wait to hear from Ethan's cardiology team in NYC to get a date when we can coordinate all the specialists for him to visit with. WOW! Such great news.
Comments
Post a Comment