Sorry!

I apologize to those of you who check this blog every night or morning for the latest updates. I just couldn't get to it last night. Yesterday was quite an up and down day for us as Mason continued to struggle with his withdrawals, his fever, his sedation, and waking up frantic every hour or so. The night before was very difficult for the same reasons, but with the addition for horrible diarrhea from who knows what. Every time we changed him, he awoke with a start and decided that breathing was overrated. Very challenging for him, for his nurse, and for his mama. I think all told, I got about 2 hours of sleep when they finally knocked him out with a major anesthesia type drug. Which brings me to the up part of the day...


The doctors have put their heads together and are trying something with Mason that hasn't been done at Doernbecher ever before, but is used in other hospitals around the country including one in Cleveland where his current attending intensivist did her training - Rapid detoxification under Propofol sedation. Propofol is a drug that is commonly used with medical procedures or surgeries. It is short acting and short lasting (meaning it takes effect immediately, but doesn't last long), it knocks a person out so that they don't feel anything, and it doesn't act in the same ways as Mason's other medications to help him through this whole process. All told, Mason was on 7 different constant medications to keep him sedated (IV Versed, Fentanyl, and Dexmedetomidine, by g-tube Methadone, Ativan, and Neurontin, and a Clonidine patch), he also used a couple of different medications as needed to help with the breakthrough (IV benadryl and by g-tube Tylenol and Motrin). The current theory is that because of the extremely high doses required of each of them, his system was overwhelmed and just shut down, blocking their effectiveness. What was more, he was having difficulty with the wean of the Fentanyl and Versed causing him to need more of the other medications and causing some withdrawal symptoms. So, at this point, they have stopped all of his sedation and pain medication except the Propofol and have that constantly running by IV. So far, he has tolerated it like the other medications when they first started -- he has needed higher doses than expected, but when it works, it works well. The good news is that starting this morning, he has not had any major desaturation spells when he wakes up. I remain hopeful that this will work, but guarded just in case it doesn't. I don't really know what the next option is, but am glad that the doctors are thinking outside the box for our little guy who makes his own rules.