Tuesday, October 4, 2011

Once upon a year (PKU post)

     Once a year Owen and I take a day off of work and take a little trip. The drive is probably one of the most boring in the state, but the destination city isn't so bad. We start the day with a list of places we want to shop at and a list of items we just cannot get in our rural county. One of the most important, if not THE most important, stop is at an international food market. It is inside where my husband of four years suddenly turns into a child. We wander through the aisles, making frequent pauses to pick up food from his youth. Various British or European items fill the little basket until we just give up and grab a proper cart. Ribena, McVitties, Walkers Chips and more are piled in. I just smile and hope the bank account can handle the withdraw.
     After our shopping adventures, it is the real reason for our visit. Owen starts to get moody and I just sigh and pick up the bag I brought along. Inside is a notebook, three days of diet sheets, something for me to drink, one of Owens' metabolic formulas and whatever magazine we decided to bring along. We check in at the front desk of the massive clinic attached to the even more massive hospital system and head up to the fourth floor. That is where things get a bit more uncomfortable. That floor belongs to the "Children's Hospital" and the bright murals, toys and children all hit you at once. However, it is also where the Genetics department has its clinic. Owen is here for his annual appointment with his nutritionist and his metabolic specialist.
     I smile and do what I can to settle him down as we wait for his turn. In truth, I'm not doing so well myself. I had overdone it over the past couple days and my own condition is acting up. However, what is, is, and we are soon called back. Barb is a wonderful woman with a no nonsense attitude and years of dealing with stubborn patients like the one sitting next to me. She first asks the basic questions, then notices that Owen has not sent her a blood test in too many months. I cringe as she gives me a look that says "and why not? You're his wife." After years of seeing that look I say, "I'm his wife, not his mom. He gets reminders and suggestions about it." For once, she actually agrees...normally I still get that look for the rest of the visit. She then makes Owen complete the test from start to finish right in front of her. He was so embarrassed, but it needed to be done. PKU isn't something to mess with. From there she looks over the three days of diet sheets she asked for, talks to us about his low weight and lower stamina, asks about his daily formula and all the other things that go along with being an adult with PKU. Then, she says something that made me want to scream. She wants him to take his blood one month from that day and send it in with a month of diet sheets. No, no, no! My mind screams.
     If you read anything at all from the PKU blog I wrote for two years you know what it is like to have someone with PKU in the house. If not, I encourage you to read that journey. I know full well that he is not going to keep those sheets and it is going to be up to me. I shift uncomfortably in my seat, partly from the announcement and partially because by that point I could trace my sciatic from hip to arch. Barb notices, looks at my hand brace then down to the compression garments showing on my crossed legs and asks how things are with me. Since screaming wasn't an option, I just shrugged it off with a "as well as it can be" and hoped she would bring in the specialist soon. It worked! Dr. Wilson and Owen chat up what is going on with the PKU world and offers up some hope with BioMarins latest projects. He also comments how it is nice to see me off a cane for once. I had to agree, even though I wished I had it with me by that point. With that we are dismissed, hopefully for another year. Of course we will see each other along the way, at various picnics, walk-a-thons or cooking classes. But Owen sighs with relief as we leave and I cringe again, thinking about the diet sheets and how in the world I am going to make him take his blood on schedule. Just another insight into Morgan's Mania!

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