Yesterday was the day we took Ryan to Johns Hopkins (Baltimore) for all the exams and tests. We had him up early and in the ambulance by six o’clock. Fourteen hours later, we finally returned home. It was exhausting.
I guess the best way to update you is to present it in chronological order:
- Platelet Function Test. Our first stop was in Express Testing. This is deceptively named (as I soon found out). Ryan is on some medications that have the potential to lower his platelet count. We’re considering adding even more. These medications (and some supplements) makes him prone to poor clotting. So, every once-in-a-while we need to make sure this is not the case. It’s a simple procedure of drawing blood. We hope to know the results by the end of the week.
- Vascular Doctor. This was the main appointment. We needed to gather more information on the decision to attempt to remove the Celect IVC Filter implanted in his vena cava vein or just leave it in place. Both carry risk. You can read about them in one of my earlier posts, Ultimate Paradox: Damned if You Do, Damned if You Don’t. Like with most doctors and their fear of liability, I cannot simply ask a question. This forces me to dance around them to get the information. So much for really ever getting a “second opinion”. Come to think of it, I never really got a “first opinion”. Anyhow, here’s the plan. We’re going to attempt to retrieve the filter, even though it’s probably not likely. If the surgeon feels at any time during the operation that it is too risky, the procedure will be called off and we’ll live (or die) with the alternative risk. This is an outpatient operation, so we’ll be heading back to Baltimore soon enough.
- Corneal Specialist. We had Ryan’s eyes examined to see what could be done to prevent further scarring or the lose of an eye (or both). It’s always a tough call with Ryan on everything. There are competing goals. On one hand, we want the eyes open so he can get as much visual cortical input as possible to help his brain recover. On the other, we must protect his eyes and this might involve stitching them shut. Our solution, that we feel is worth a try, is to partially close them (imagine how your eyes slit when looking into the sun). It’s a compromise… for now.
- MRI. We’re now into mid-afternoon and Ryan is registered to go in for an MRI of his brain. It never happens. Johns Hopkins administration has botched the paperwork. The MRI Technician will not accept him until it is all in order. Two hours later it is still not resolved. The hitch? Ryan’s shunt he has embedded in his brain (to drain off excesses cerebral fluid) cannot be verified. It doesn’t matter that we know the model, it must be confirmed by the original surgeon. The hospital that put it in (Piedmont in Atlanta) does not respond after repeated attempts. I am upset with Piedmont, but don’t blame them. They were needlessly put on the spot. The fact is, this should have been taken care of before the appointment was ever scheduled.
- Pre-Op. The day ended with Ryan being taken to register for the upcoming IVC surgery. He was also give a quick physical examination. We answered the same set of endless question we always answer. Yesterday it happened with each new appointment, despite being the same facility. I’ll never really get why that has to happen. We always send Ryan’s complete medical files to the doctors well in advance, with answers to the questions we know they will ask, but it’s always the same routine.
With everything wrapped-up for the day we finally left, navigating the endless maze of tunnels with Ryan in the stretcher. We had the same EMT crew with us the entire day. It was necessary because we had to transport him from building-to-building on the Hopkins Medical campus. I can’t even imagine — nor do I want to — how much that bill will total.
The ambulance arrived home an hour and thirty-minutes later. It was eight o’clock at night. Just because we were home didn’t mean we were done. I spent the next ninety minutes putting Ryan through some passive exercises and back massage before getting him into the shower. He deserved to get loosened up after a rough day out!