Well, Hell

Max lost weight this week so we’re headed back to the hospital tomorrow for more testing. Luckily, the four ice cream shops on my block are happy to meet my stress-eating needs. Also helping: the fancy chocolate shop across the street, a freezer drawer filled with really excellent-quality German sausages that can only truthfully be described as cheese-filled hot dogs, and, for some reason, all the Oreos I can find.

More to come after tomorrow’s fasting and tubing and CT scanning (for Max) and chocolate and worrying and more chocolate (for me).

Beginning to Maybe Succeed to Thrive!

Maxy dearest has put on a whopping 200 grams, which means that we have been discharged to the care of our pediatrician! Hurrah! The pediatrician is a kind, interested man who seems to care genuinely about Max and who takes time to review his case with the other providers. Every time I leave his office I feel reassured and in good hands, and then I report what he actually said and have a little wait, what? moment. Some examples:

  • To show concern about Max’s insane gagging reflex and inability to drink from a bottle: ‘No, it’s not a good thing that a child would die right away if he was separated from his mother.’ Fucking hell, man, no pressure, right? Wind me up tighter, why don’t you?
  • To explain his decision to refer to the cardiologist for immediate evaluation of a heart murmur, ‘The sound I’m hearing in his heart is probably a small hole because it’s making a lot of noise. Like stepping on a hose! Although he is only a little baby, so even a small hole may seem quite large.’ One hand clapping say what now?!
  • When evaluating Max at our most recent visit and noting that his weird chest/sternum depression has gotten more pronounced, while waving his hand as if swatting away a fly: ‘Yes, it’s some sort of mutation but we won’t worry about that right now.’ I’ll start my 2014 to-do list then, shall I?
  • About our present situation: ‘There is a problem with Max. I don’t know what it is, and the hospital doesn’t know what it is. The best thing is for you to go lie on a beach for a week and we’ll talk later.’

In real estate it’s all location, location, location; with Dr. Jacob it’s all delivery, delivery, delivery, because although his choice of phrase is asinine, the overall impression he leaves is one of appropriately concerned competence. He’s right, too: we’re at the point with Max that we’ve run through the less invasive tests, and he’s still gaining some weight (sometimes even a very reasonable amount,) and although his feeding sessions are often a little nightmarish, overall they’re getting the job done. We’ll defer the more awful kinds of testing (those with radiation and weeks of tubes and etc.) until we’re forced to by a dip in his weight. Until then, we might not be going to a beach (Turkey, which provided us with a really lovely beach vacation just a few weeks ago, is now having the kind of civil unrest that is not helped by the arrival of screamy babies,) but we will revel in my mother’s excellent company and pinch this little guy’s slowly growing but adorable cheeks.


Update: Almond Milk and Hospital Respite Edition

Questions whose answers are NO:

  • Is Max gaining a reasonable amount of weight?
  • After three days in the hospital last week, do we know the reason?
  • Did the pediatrician at the hospital explain what he was getting at when he asked if Max looked like his sister or other children in the family, given that his low ears, wide nose root, pulmonary stenosis, lower eyelid folds, oral caving, and failure to thrive are all markers for various syndromes?
  • Does googling ‘low ears, wide nose root, pulmonary stenosis, lower eyelid folds, oral caving, and failure to thrive’ help one sleep?
  • Does googling ‘mosiac + syndrome’? No?
  • What about googling ‘continued insufficient weight gain, long-term impact’?
  • How about ‘is it my fault because I was running too much when he was tiny and /or in the womb?’ Does that help?
  • Would it be the end of the world if Max had a syndrome, whatever the type?

Questions whose answers are YES:

  • Are we, on the whole, doing just fine?
  • Is my mother coming for a visit on Thursday?
  • Does the mechanism for drug introduction for Max’s upcoming sweat test for cystic fibrosis involve pushing a medication through the skin using electrodes? (cool, huh?!)
  • Is it sunny out in Hamburg right now?

So here we are, not eating dairy because he seems to NOT be allergic to it and we want to know for sure (we’ll reintroduce dairy over the weekend and watch for a change in symptoms, at which point I will either become a meat-eating vegan or bury my entire face in a bucket of ice cream.) Using the breast pump four times a day because milk supply doesn’t seem to be the problem (and using the resultant milk to get him used to the bottle so that we can push formula if needed.) Going to the osteopath today to see if aligning his chakras AGAIN will make any difference (even the osteopath says that it won’t.) Home from the hospital because we don’t yet know what’s wrong with Max (we’ll see if he gains or loses weight this week and will be readmitted on Monday for more testing.) We’ve instituted a No Googling After Dark policy, and we’re feeling very, very lucky to be a part of a healthcare system that covers every test, consult, procedure, chakra alignment, and minute in the hospital. My thoughts are with families who have to decide on testing and treatment based on what they can afford. Shame on you, Rick Perry and every other anti-Obamacare asshole, for putting so many people in that position.


And another couple of questions whose answers are no and yes, respectively: Do I have a firm grasp on what it is an osteopath does, exactly? and, Am I about to be late for our appointment with said osteopath?