I don't usually dwell on this particular topic on the blog, but this cold has brought with it a lot of puking. Even Lime has coughed to that point a few times with this particular bug, and with Lemon every meal and tube feed has been fraught with peril. Ick. Lots of gross laundry, many, many outings with my new steam mop, etc. But, on the plus side, our issue from a few weeks ago of a certain someone performing bodily functions where they should not be performed seems to have stopped of its own accord. So, although there was gross laundry, there was a dearth of other gross messes to be cleaned, which felt like progress.
However. There is always a "however." However, it seems that all this puking from having a cold and a bad cough and swallowing a lot of mucus gave Lemon a new idea. Perhaps he found that being the potty bandit did not result in the amount or caliber of attention that he had in mind. He certainly noticed that if you puke, your parents tend to sort of rush around, act extremely sympathetic, cater to your needs and wants, etc etc. Those of you familiar with kid logic may see where this is going. We had a few puke incidents that came without the usual warning signs, but sometimes there are no warning signs so I didn't think anything of it. Then we had one last night at dinner that seemed really sort of weird, like everything was 100% fine one minute and 100% the opposite of fine the next, where I actually said to Papa Bear afterwards that I suspected Lemon had done it intentionally. But, we both rejected the idea, because really, who does that.
Then, there was this morning at 4 a.m., when Lemon started yelling "Hello!" very cheerfully from his room. He has a stoplight clock, and he knows that he is not supposed to wake us up when the light is red unless he needs help. We'd had a couple of mornings over the past week or two where he's done this "Hello!" routine at ungodly hours and been given a stern reminder about the whole red light concept. So, I stumbled out of bed and over to his room grouchy and annoyed and ready to give the whole red light speech again. But, when I opened his door, he said, with a big grin, "Look, I threw up!" Having no choice, I sprang into action with the whole cleaning routine, while talking to him in a neutral tone about what was going on. Was he feeling sick? No. Was he coughing a lot? No. What happened? He wanted to throw up, so he did. Of course, by this time, all the commotion had woken Lime up, so we all got to start our day, which I suspect was Lemon's objective all along.
I sincerely hope this is a short phase. Or maybe just a one-off. Throwing up isn't fun, right? No amount of getting to sit on top of your grumpy mom and discuss the relative merits of various sports cars at 4:41 a.m. is worth that, is it?
In less gross news, we are still trying to figure out a solution to our overpriced ursodiol problem. We transferred all of our prescriptions from CVS to the children's hospital, and at least there they are only charging us $60 a bottle for the stuff, rather than $90, but $60 is still quite a bit more than the $5 we would like to be paying given that it's a generic medication. We'd like to switch to pills, which we could just crush and give through Lemon's G tube, so I've been in communication with the GI doc's office about that. Well, actually, I have been locked in a MyChart messaging war with a nurse who, how shall I say this, DOES NOT KNOW HOW TO DO MATH. Like, the kind of math you would need to be able to do to divide the number of milligrams in a pill by two and compare the result with the number 170 milligrams to determine if it were a) the same number, b) a smaller number, or c) a larger number, and to make a therapeutic decision on the basis of that comparison. For the moment, I am giving up on this war, because I lack the time and energy. We will just pay for this month and next month's bottles of the compounded stuff, and then see how Lemon's liver enzymes look in December. If the ursodiol seems to be doing something (in which case we will continue it long-term), perhaps I will be able to find a way to actually speak to the doctor, who presumably understands both math and the concept of therapeutic range, and we can work out an actual solution.
A closing note from the "height of irony" department. Lemon's Pulmozyme prescription is filled by CVS specialty pharmacy. Theoretically, it is possible to get the prescription set up to auto-refill. I say theoretically, because Papa Bear is among the most intelligent and diligent of pharmacy customers, and for over a year he has been unable to achieve this despite innumerable attempts. Finally, today, he succeeded. And, tomorrow, he will have to call and transfer the prescription to our new pharmacy. Victory!
