I hope you are having a great week, it's almost Friday! I really wish that I had great news to report, and that I am going home tomorrow. I didn't post yesterday as I had an extremely difficult time with the switch from IV to Oral Steroids. Although the dose is quite similar, oral steroids are not absorbed as well, particularly in my scenario in which inflammation from mast cells affects my ability to absorb nutrients and medications through my GI tract. I was ok in the morning following my dosage.
However, as the day progressed, things started to slip. Nutritional Services came by and told me that they want to increase my calorie intake to maintain/gain weight and make sure my body has enough fuel to heal. We were trying to think of things that I would find appetizing since the steroids affect my appetite so dramatically (one extreme or the other). I had been craving baked goods, and the nutritionist found a brownie that should have been safe. It was fully sealed and packaged, no cross contact warnings, or questionable ingredients what so ever- we look over it thoroughly. I had a bite of the brownie, and it tasted spicy-- that is often how I know if the food is a trigger. We immediately started extra Benadryl and breathing treatments, but the swelling progressed too quickly, and they had to give me a dose of Epinephrine (same thing as an epi pen, just in the hospital they use a normal syringe as opposed to the auto injector). It seemed to work for a little while, but I still had a lot of swelling, and discomfort on my face and lips, as well as the widespread itching and burning. I had an additional wave of symptoms a few hours later with no clear cause, which again didn't respond to breathing treatments or IV Benadryl, so they had to give me an additional dose of Epinephrine. By this point, I was absolutely miserable. It again provided me some temporary relief, but I was up most of the night fighting the swelling.
Since I had to use more epinephrine, and still was experiencing difficulties, the oral steroid trial was most certainly a failure. I was extremely frustrated and disappointed (and still am). So for today, I had IV steroids. Once they gave me the IV steroid dose, things were a LOT better, and I was a lot more functional today, although exhausted from a lack of sleep. When I was feeling better today, I made some more things for the nurses out of the IV bottle caps (Cookie Monster, Elmo, Emoji, Duck, PacMan, Daisy)
The hospitalist here has been really amazing in staying in touch with my mast cell doctor. We decided that the current plan is to get me out of this flare first and foremost. We want to try to give the increased Gleevec dose a week or two, and if that fails, then we are likely going to have to initiate a Continuous Dipenhydramine Infusion, or CDI. This is a IV pump that goes through the port that is implanted in my chest that I would go home with, that would give me a small, continuous dose of Benadryl 24/7. Obviously, this is far from ideal, as not only is there a significant infection risk from being on an IV 24/7, but there few (if any) individuals who are on a CDI who have ever been able to come off of it. However, if episodes like this keep happening, it is a matter of quality of life. A CDI would dramatically increase my likelihood of being able to return to school in August, and functionality in the mean time. Again, we are still hoping that the Gleevec will do the trick, but the doctor is having the pharmacist here investigate the logistics so it is available if I need it.
Because yesterday was so horrendous, I am not going to lie, I am nervous for tomorrow. I hope 24 hours was long enough for my body to hit the "restart" button, and tolerate the change in steroid dose. My fingers and toes are crossed, so I could get out of here on Saturday. Luckily, my doctor will be here through the weekend. This is my longest hospitalization yet, and I REALLY want to go home, be more comfortable, and sleep. However, It has to be a delicate balance, or else I will just end up back here. It is my little brother Cody's birthday on Monday, and I would be heartbroken to miss it. I will post tomorrow, hopefully after a successful day!
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