We completed our first weekly checkup run to Hopkins this week. After only 4.5 days at home we needed to pack up and make the almost 3 hour trip back down to JHU to have his ammonia levels tested.
We put 6 hours of road time for a 40 minute visit. Ouch!
There was a slight hiccup when the doctor told me that I was supposed to fast Corrigan for three-hours prior to his appointment and I fed him, in the car, on the way down. Not a single soul gave me that information at discharge and I felt my chest redden with embarassment that I had screwed up the very first appointment. Had I know I surely would have followed all instructions exactly but I didnt know. Somehow, I still felt responsible. They told me that his numbers would "read high" since he had just eaten and to just make sure that for all subsequent visist I fasted him.
They did a physical assessment of the baby and he is doing really well. He was 8lbs 14oz on discharge the Friday before. On Weds, the day of the appointment, he was 9lbs 2.9 oz…and looks like he is storing acorns in his chubby little cheeks. They were able to get a good blood draw on him and we were gone in only a few short minutes to visit with my dad while awaiting the results.
The doctors said that they would call with his results but we waited hours and hours with no call. I paged the doctor and left her a voicemail with no return call. Not exactly the way Id hoped that the first visit would go but we did get a call the following morning letting us know that his results were "perfect" and that we would be increasing his formula because of his weight gain.
Part of me has a hard time believing "perfect" since we did not "fast" him properly before his blood draw…and maybe they told me that to ease my mind…but surely they would have let us know if things were a bit too wonky.
We have to make these trips to Hopkins every week for a few months. Maybe even the first year. They are considering letting our local hospital attempt a routine ammonia test soon…the hope being that we will be able to at least cut back our Hopkins visits to every other week but until then we have to travel for the exams. Considering the price of fuel this is no small feat. We estimated that we spent $75.00 on a tank of gas to take the Durango to Baltimore. Our other vehicle is better on gas but much less reliable so we will need to look into finding another vehicle in the near future.
Mark has already missed over three weeks of work in all of this and weekly trips would normally require him to miss an entire days worth of work which is a slap to our paycheck and an inconvenience to the business so we are also looking into an aircard for the laptop which is $60.00 a month plus we have to change our phone plan because we are "roaming" when we are about 4 centimeters outside of the city limits. The only plan that will work for us is the Unlmited Nationwide plan that is $99.00 a month. This will allow me to do the driving and Mark can still take care of business while in the vehicle and while we are inside for the appointment. With a small lunch while down in Baltimore we estimate our monthly travel cost to be around $520.00. I am hoping that our local hospital will be able to handle the tricky ammonia test and we can move our Hopkins visits to twice a month but if it doesnt work out that way the $520.00 is a small cost to pay to be able to have access to an amazing team of doctors and knowledge.