I don't even know where to begin...
I probably should be sleeping right now but, as soon as I fall asleep something else will happen. I got to the hospital at nine to relieve Matt so he could go to work. In the process of switching out Xavian pooped all over the place, then peed on the shirt we changed him into, all the while transport was waiting to take us down to Xray.
It was a quick trip down there an back. Thank goodness. The doctors put an order in for the xray because Xavian's methotrexate levels still had not gone down - after increasing the Leucovorine (rescue drug) and iv fluids. They were checking to make sure he didn't have any fluid build up in his chest - causing the methotrexate to sit there. Results - no fluid.
Once we returned to the room they came and gave him another dose of the Leucovorine. After 30 minutes they came back for labs to check the MTX levels again. I was saying some prayers so that we could move on to the next drugs. Results - levels went back up. It's so frustrating! He had been so happy and more active the past few days. How could he not clear the MTX with all the peeing he'd been doing?!
At the end of the day (five for most people) our wonderful nurse practitioner came in to let me know she had spent three hours reading and researching MTX and how it's excreted from the body and what our next step would be. She was perplexed as to why his levels would go back up. She asked if I was taking any suplements that could be passed along through the breastmilk. Nothing. Not even the prenatal vitamins I should take while breastfeeding. His levels aren't dangerously high but it's at the tail end where they should be back to normal by now. She wasn't too concerened with that. What she was concerned about (and I quickly became concerned too) was the delay this would put on Xavian's treatment. I was also concerened with the mouth sores. Would their onset be quicker than the first round? Would they be more severe? She could almost be certain he would be getting them again; if not sooner. They were pretty severe last time. She couldn't emagine anything worse than that. If the levels aren't back down by the time he gets sores we would have to wait to start the other drugs. This could take a week (as it did last time). Because of that, we would have to start round two all over again. You see, for this treatment to work he has to get the drugs within a certain time frame. They can't give the cells a chance to start dividing again. Again, it's all very frustrating because Xavian will have to go through all that pain one too many times.
The nurse practitioner went over all the options with me. One, she had read an article on, is to give Cholestyramine. It's used to lower cholesterol but she found this article and talked to some other nurse practioners that had used it to bind with the MTX and pass through the body. Sounds good to me. Better than the option of using charcoal.
So, Xavian has gotten a dose of Cholestyramine and an increased dose of Leucovorine. He will get more blood drawn at midnight to check the MTX level and then again in the morning (eight). Please pray the level will be where it needs to be (.1) and we can move to the other drugs before he gets mouth sores. Sorry for the long post, it was a long day...
Question...Why do the nurses wait until 11pm to get boisterous?
8 months ago