So let’s go back in time a little shall we? When last we spoke, prior to the last time we spoke, but we are not really speaking, well I am speaking but since I am sitting all by myself in the surgery waiting room, it is a little bit strange, the olderish lady near me is giving me strange looks, she might be hitting on me, wait they just called her name, and her name is Mrs. Robinson, unbelievable, you can’t make this stuff up, well maybe you can, (note that while writing this “sentence”, MS Word did not underline any part of it green. That means that I did not violate any grammery rules. Either that or Word has given up on me as a lost cause.)
For those of you keeping score, last November we were deeply involved in a fight against that stupid slow growing myco-whatever bug that prevented Cole from drinking as much milk as he wanted. Well just as we were beating that bug down, Cole caught another bug. This one came from the gut and sent us back into the hospital for a couple of days. After, of course, a few trips to the ER.
Coming out of this experience, UCSF decided to switch us off to a non-immuno suppressing treatment. Now I have been a part of this fight for over two years now, and we have seen some crazy treatments (see BMT, MIBG therapy, etc.). This new one seems, on its surface to be a pretty calm and benign treatment. All Cole has to do is take an oral medicine three times per day for a week, then take two weeks off. Then repeat till forever, I think. As you should have been able to guess by now (if you were not able to guess, please see an adult, Jackson, or Cole for assistance), there is a twist…or two. The medicine is not a pill, nor is it a liquid. Nooooooooooooo, that would not be consistent with how UCSF gets down on the med front.
This medicine comes in a “powder” form. I say “powder” because the consent forms refer to it as “powder.” Now when I think of powder (notice the lack of “” to distinguish differences in meaning. Don’t feel sad, some day you will start to understand how my world works.), I think of chocolate milk powder, Gatorade powder, or maybe lemonade powder. ‘parently; however, “powder” is more like concrete “powder” or Metamucil “powder.” In addition, the medicine smells like the apartment on 1st from back in the day (think (insert very high pitch Asian female accent) Chriiis and Jiiim. Think orange couch that would hold on to your basketball shorts even if you are performing commando operations, much to the chagrin of your future sister-in-law). The final kicker of this medicine is that it cannot be mixed with anything that is high in fat (which means, again, no milk. It also means that it cannot be mixed with bacon grease). So three times a day I had to make some crazy concoction (thank Zeus that I was a trained master mixologist) involving sorbets, soda, and wood chips and then force Cole to scarf it down. If you remember the scene in Harry Potter 6 when Harry had to force Dumbledore to take the potion in the cave, then you have a good image of Cole (sans beard) taking this medicine.
The only kind of cool thing that resulted from the last infection and the fact that we are on an oral medication study is that they took out the pic(k?) line. This means that I don’t have to wrap the boy up in cellophane (Mr. Cellophane do you know my name Mr. Cellophane) to take a shower. He has been swimming without having to worry about the stupid line being submerged.
After Cole got out of the hospital the last time, and even though we have started this new med, he has still been having stomach pains off and on. They did another CT scan and found out that he has a medical mystery inside his gut. So the wonderful Dr. Sullivan is, as I type, poking around in his belly to try and figure out what is going on. I will update when I find out more information. Until then please raise your glasses and toast Cole, RN (which he says is a better job because you get to care for the patient more than a doctor does).