2012: may you improve from here on out

A few weeks ago, when en my Mother-in-law asked us if we'd be able to pick her and Jolly and RJ's fabulous Aunt up from the airport on January 3rd, Ephiny had said no on the grounds that it was our eighth wedding anniversary and that we had other plans besides making a late-night long distance airport trek.

By other plans, we meant some of the following:

• A relaxed, lazy vacation as a family of four, visiting extended family we don't see nearly often enough.
  
• Romantic sushi dinner at father-in-law's home.
  
• Enjoying being clasped to the bosom of extended family on our first visit to the east coast in three years (on our last trip out there, we had our shotgun legal wedding when Ephiny was expecting Jolly, officiated by my parents' plumber and all around fix-it-guy who is also a justice of the peace.)
  
• Recounting happy moments of the past 8 years of marriage, and 12 years of being together.
  
• Watching a dippy romantic movie or two (Love Actually was on the menu, but also Siam Sunset)
  
• Private grown-up adult time after our stellar sleeping children went to bed.
  

Conspicuously absent from that list of plans were:

• Waking every two hours to feed a very cranky baby.
  
• Being projectile vomited onto repeatedly.
  
• Going to urgent care with our baby "just as a precaution" as per the consulting nurse.
  
• Getting sent from urgent care to the ER, "just because we don't feel comfortable assessing this case".
  
• Being admitted to the children's hospital from the ER.
  
• Adding "on a stretcher" to the list of locations I have nursed in public. Thrice.
  
• Getting an ultrasound of my child's bile duct.
  
• Scheduling Baby's First MRI.
  
• Learning more about the liver bile duct than I'd ever wanted to know.
  

But you can guess what we ended up doing on the night of our anniversary: romantic sushi dinner at cribside on the hematology/oncology ward, where our youngest child was admitted because there were no beds available elsewhere.

In the days that followed, RJ and his liver and gallbladder's common bile duct proceeded to surprise the specialists with things that were "interesting!" and "not what we expected!" and "not something we've seen before in a child this age!"

As Ephiny said, "when we got you the onesie that said 'I'm special like a snowflake!' this is not what we meant."

So the short story: the cause for white stools from January 1st to January 5th turned out to be a bile duct obstructed by sludge, which he dramatically cleared on his own about half an hour before he was due to be sedated for an endoscopy procedure to remove the plug. (Whether said endoscopy would actually have taken place is actually debated, since although they were able to find an endoscope small enough for our wee lad, the enormous world-class children's hospital did not have anyone on their endoscopy team who would have been willing to work on such a small baby.)

Normal colored, bile containing poos have never been so exuberantly welcomed. Even the tendency to blowout all over the back of his outfits is now being regarded as a reassuring sign that consistency is back to normal.

RJ was stable enough to get released from the hospital on January 6th, just in time to fly back home on January 8th. Before doing so, we did learn that my ability to enjoy dinner parties is greatly hampered by having had less than three hours of sleep per day for the last week, especially if that sleep came in hourly installments for several days prior.

RJ is now on an exciting experimental medicine compounded expressly for him to try to prevent him from having more bile sludge turning into plugs, and we are waiting on the result of a barrage of even more exciting genetic tests to try to figure out what on earth causes him to be forming said bile plugs at the tender age of 2 months. (Exciting not necessarily in a good way. Do not google Progressive Familial Interhepatic Cholestasis. Or Alpha Antitrypsin-1 Deficiency.) We are referred to a pediatric hepatologist here at home, and am hoping to schedule an appointment as soon as possible. We are having a comprehensive fasting lipid panel run on Friday along with checking that his liver function is continuing to trend back to normal.

The horror of enforced fasting before medical procedures such as this upcoming blood draw is only matched by the horror of RJ continuing to be an incredibly tough baby to get any blood samples from, owing to unusually tiny veins, a ridicuously swift clotting ability, and what can only be described as a generous amount of padding around said impossible-to-locate veins. The fact that his limbs are super-bruised and all remotely suitable veins have been skewered into oblivion by the adventures of the past fortnight only makes things more difficult.

This is obviously all rather a crap way to start the new year. I really had so been enjoying every day that RJ was out of the hospital with daily affirmations like "I'm SO happy you are home with me!" and "How grateful I am that you are not sick!" The road to taking home this baby was hard enough that we didn't really need yet another reminder to hold him extra-tight and cherish every moment, but I do think we're very well equipped to fight this fight, armed with knowledge and terrific support systems of family and friends as well as a great family doctor who has been calling us every day to check up on things.

We're trying to keep our spirits up and have mostly been able to do so, largely by reminding ourselves that things could be so very much worse, even if the scariest things on the table (say, PFIC, for example) turn out to be true (and they very well might not!). And, although this current bout of ailments is objectively more worrysome than RJ's last stint in the hospital because it's much less well understood and could be a much more persistent thing, nothing is quite as terrifying as breathing issues because those are so very IMMEDIATE. (Our child's enormous BRAIN needs oxygen, for one!)

And the NICEST part of this recent hospital stay was reassurance that RJ's breathing issues are well and truly over, since every vital signs check his O2 sats were 99 and 100, with a low of 97 (very normal!) one time (I think when he was heavily sedated for his MRI). It was a thrill every time they hooked him up to an oxygen probe, seriously. Now that we are back home, it is such a relief not to be having a paranoid portion of my brain dedicated to listening for his breathing all the time, and just being able to trust that RJ has finally figured out breathing and keeping his blood well-oxygenated.

Here's hoping that producing and secreting bile follows suit.