G-tube take #1. We saw Daniel’s nutritionist on Monday. He had lost about 1 lb in the last two weeks, but that could also be as a result of clearing out some constipation. (Pleasant topic of conversation, I know.) It was a smaller drop than the last time so no immediate hospitalization, but it created more of an impetus to get moving on the G-tube. R will be doing his inpatient nutrition care, so at least I know part of my team already.
G-tube take #2. We met the anesthesiologist (love her!) and surgeon (really love her!) on Tuesday. We like both of them. The only problem: the surgeon wants him to be inpatient for a week prior to up his nutrition to give his incision a better chance of healing. That throws a wrench in my life, but not a huge one. I’m not taking any in-person classes this summer and I’ve lived on hospital units with this little monster before, so it’s doable. The only downside is missing Minion a whole lot because I obviously can’t take him with me.
G-tube take #3. Daniel’s gastroenterologist (Dr. No) called yesterday and wanted to admit him THAT AFTERNOON. My response: “No.” When I was questioned as to why I would question her ruling, I explained that I had a doctor’s appointment today (Thursday) that I had been waiting for 6 months and that would impact my ability to function if I didn’t keep it. Dr. No also explained that they would be starting out with him doing nutrition by N-G tube, which is just about the stupidest idea on the planet… which has been pointed out by me, the physician assistant working with Dr. No, Daniel’s nutritionist R, Daniel’s surgeon, Daniel’s regular pediatrician, and just about anybody who has spent more than 15 minutes with him on a meh day.
I may or may not have excavated a new rear sphincter opening for her during our final conversation yesterday (yes, there were several — I don’t think she likes me right now and I couldn’t care less), at which point I **FINALLY** found out that he’ll be admitted on Saturday afternoon and where I get to go for this. (Seattle Children’s is YUGE… bigly even!) She also told me that they *sigh* will have a back-up plan (a PICC line) and enumerated the risks of said plan. (While she was pontificating, I was rolling my eyes so hard at the phone that they fell into the floor of my car because I am familiar with PICC lines… especially since my kid HAD ONE FOR TWO MONTHS in the NICU and my former father-in-law had one for several years.)
I should point out that Dr. No is not incompetent — she’s quite brilliant — but she doesn’t quite get autism well and doesn’t understand that my child is more of a cranky 3-4 year old than a 9 year old, so he isn’t going to be cooperative and leave his N-G tube alone.
MY appointment. I finally got my neurology consult today and it was… intense. My neurologist is lovely (though very high energy and intense) and gave me credit for having a mind (yay!). She’s doubling my migraine preventative, sending me to sleep medicine (I very likely have sleep apnea), putting me on magnesium, and a few other things. My only criticism is that she told me that my stress level would improve if I meditated… which makes me stabby because my stress level would improve if I wasn’t largely managing my medically interesting kiddo with special needs on my own while also trying to finish my degree and be a functional adult.
Duuuuuuude… I just got the news that my dear friend Richard has been elected as Moderator of the United Church of Canada. Having known him for 16 years through blogging, I can honestly say that there is no better person for the job. Congrats, my friend. I am so incredibly proud of you.
Huh. Does anyone else remember all the McDonaldLand commercials? There were toys too apparently.
My earworm. I’m feeling like Armenian choral music today.
For more Quick Takes, visit Kelly at This Ain’t The Lyceum.
