Six hours and a kick in the ass later. . .
I’m on my way to Hannah’s regular six month metabolic clinic appointment to check her status with MCADD and feeling all my general PTSD feelings on the way. The route I drive to get to Primary Children’s Medical Center is the same route I would drive to see Claire in the hospital, right next to PCMC when she was born, and again to see Hannah when she was born, and each time I have driven one of the girls up in a panic that they were ill and fading fast, such as when Claire got RSV at five months of age, or the two times Hannah’s vomiting has caused me concern enough to take her in for a blood work up in the middle of the night. I felt the tears come up but the Xanax kept them at bay. We went in to clinic and were seen only about thirty minutes behind schedule which is not bad, considering their track record. I had to report that Hannah had a fever this morning, and that I didn’t know why, but that she was 102 so I had given her Ibuprofen and brought her in anyway although this was a regular check and not a sick child visit. Dr. You-know-who was concerned and started amping me up immediately, because Hannah has once had an unexplained UTI. The regular pediatrician had wanted me to get a test called VCUG which is an ultrasound to check for abnormalities that allow reflux back up the urethra or some such thing. I explained I’d been reluctant to spend any time at PCMC during the really sick kid season, since the UTI could have been a flukey thing and I didn’t want her exposed to any bonus bugs that the hospital is full of. While we were there, the doc checked her temp and found it had spiked to 103.5 even with Ibu on board so he sort of panicked and wanted her to have an intramuscular shot of high dose antibiotics while we waited for a test to show whether she did indeed have another UTI or that this fever was just from a regular ol’ virus, but still one that could cause a metabolic crisis. After much ballyhoo, we went at the doc’s direction to the outpatient pharmacy to get a dose of antibiotics which we were to bring back to the clinic to have a nurse administer. Now, the genetics docs are mostly theoretical folk, and although they see their patients when they are sick, they lack some basic skills about regular kinds of testing and treatment, and just the way things are done generally. So down at the pharmacy, they didn’t want to even fill the thing because I would need home health nurse to administer it. I explained that I don’t have a home health kind of child, that Hannah doesn’t see a nurse at home in that fashion. Back to the drawing board. Eventually I got it filled (about one extra hour) had my poor infant catheterized in the ER because the lab doesn’t catheterize, and finally headed back to clinic. By now metabolics is done seeing patients, my doctor is gone, and everyone wants me to know my doc has been wandering around with a sheaf of papers looking for me so he could give me my referrals and see that we’d had our shot. I kindly offer up the vials only to be told no nurse on duty in this clinic can reconstitute the drugs, and that must be done by inpatient pharmacy. So we wait. We are not inpatient. We are not a priority. An hour passes. For someone to mix two vials, warm it up, fill a syringe, and bring it back. Meanwhile our doc comes back, gives me his personal number, tells me Hannah is making ketones so we know she is not eating enough to handle this high a fever, and sends me out with strict instructions about ibu / acetaminophen dosages and how to call him directly if she seems lethargic. She is of course passed out in my arms, having been poked, prodded, had a tube up her hoo-ha and a generally shitty day. He tells me if he can find my drugs he will give us the shot himself. I feel some concern that he may not be good at it. And we wait. Eventually a nice nurse returns, who is possibly the official doctor you-know-who wrangler and she takes us in an empty room and gives Hannah the shot. Hannah screams bloody fucking murder at the indignity of it all but passed right back out on me as this whole episode had now occurred thought the timing of normal naps. So then, because I was unsure I could get her in the house and back down for a nap, I went home, but left her sleeping in the nice cool car, and went in. Got my laptop, wrote in the still idling car in my driveway (environment be damned, I have a baby to make rest) and then went for another drive so I at least know she has had one hour of uninterrupted sleep in the relative peace and quiet of her Cheerio encrusted car seat. Soon I will take her in and dose her for fevers and try to tempt her with any food known to Hannah kind, including Natural Cheetos, and everything the nutritionists oppose, because I just want her eating. And not going to PCMC in the middle of the night. Call me selfish, call me irresponsible, but a mom’s gotta do what a mom’s gotta do.
Fuck you universe. I’ll get you back, you asswipe.
Notes from NYC: Part One, The Apartment
1 hour ago