Baltimore – Day One

Preparations for our yearly pilgrimage to Johns Hopkins were exceptionally painful this year. Up until Friday our status was:

1. No insurance approval for any of Max’s visits or testing. Or more preciously the computer system could not find any such approval, although United insisted everything was in place.
2. The State of Arizona decided to change Max’s Medicaid status to a program known as CRS, a damnation I have been able to avoid these last eight years. Because of this program change I was told that they too would not have approval for services in place in time for Max’s appointments.
3. One of Max’s core doctors had an emergency schedule change and would probably not be able to see us this week.
4. No hospital lodging was available to us.

Long story short I spent all of Thursday and Friday with a phone (and sometimes two) attached to my ear. In the end I succeeded in rectifying all logistical issues….or so I thought. The real fun was still about to start.

Round two of the logistical fun and games began bright and early Sunday morning during check-in for our first flight. You know things can only go downhill when the ticket agent tells you that there is no reservation in the system for you. Really? After at least thirty minutes of searching and a long line of other travelers forming behind me (I made NO friends at the American Airlines counter) the agent found our reservations. Problem solved….just in time for the next one. It seems our tickets had not been paid for. Really? I explained that these tickets were issued through a charitable organization that helps children travel for necessary medical treatment. After much searching in many systems, they were able to see that the tickets were paid for but we still had to pay the taxes. I handed over a credit card. Problem solved….just in time for the next one. Evidently although it was a beautiful Phoenix morning and a balmy 75 degrees in Baltimore it was snowing in Dallas. Snow in Texas in March. Really? By this point it must have looked like I was going to cry so now two agents were furiously trying to get us through to Baltimore, each with a computer and phones planted to their ears. It took them another hour but they did it (at this point I REALLY DID NOT have any friends behind me in line), we were on our way! A short fourteen hours and two planes later we found ourselves in the taxi line at BWI airport. Problem solved.

With such a rocky start we are hoping the rest of the week will be uneventful. Max had his first appointment at 8 o’clock this morning with the orthopedic surgeon who felt Max looked really good, obviously a great start to our week. We were also scheduled to see Max’s cardiac surgeon today but he came out to ask us if we could come back later as he had to run to the OR. In another positive twist we decided to meet on Wednesday morning after Max’s echocardiogram and cardiac MRI which means we will be able to review all the findings together as opposed to waiting for a call next week.

Tomorrow is our busy day with appointments from early morning into the evening. So there should be much to report tomorrow night. Fingers crossed that all continues to go well!