Happy Year of the Ox!

Pictured here: Aunty and Bo!

Field Trip to the Hospital

Recent discovery: a line that infuses and draws beautifully can seize up and get 100% blocked in a matter of hours for no reason even while infusing. I flushed his line this morning at 6:30AM when his Omegaven infusion was complete. He climbed the stairs twice, we read half a dozen books, circled the house several times and had an hour worth of Feldenkrais lessons when his pump started beeping. Down stream occlusion, it said. Well, he and his teacher had been horsing around and his line was wrapped all around his body. I thought that was the problem. We untangled the two, but it kept beeping. Then we untaped his dressing thinking the line may have kinked up without us being able to see it. More beeping. I finally cut the lesson off half-way through and we went to the ER after calling the surgeon and the pediatrician. Unfortunately, the surgeon on call was not the one we prefer. He was rather conservative and was trying to brace us for an emergency broviac placement surgery. Luckily, the radiologist on call was more confident than the surgeon. He and his team were able to send a wire through the occlusion and determine that the tip of the line was still in his heart. And Bo was incredible, I got him to fall asleep in the radiology room and they put the guidewire in as he slept! What the surgeon reminded us what that what is very likely happening is that the tip of the line is still in the heart because the vein has grasped onto the line since it was placed when he was 3 weeks old (and barely 6lbs). Now that he is 19 months and 28 lbs, the fact that the tip of the line is where it was placed implies that the line that is inside his chest has stretched, like a rubberband. But since it is a just a stretchy tube, as the line has gotten stretched longer, it is getting stretched progressively thinner. There is a very good chance this will happen again without warning, or that it might even snap (!). So we are planning to schedule the placement of a new line very shortly. Yikes. And to be gentle with all our flushes until then.

Good thing we didn't have anything scheduled for out of town this weekend!

Various States of Undress

He prefers not to wear pants, the oppressive form of Western attire that makes us all cranky. Would that we all could sport mumu's without incurring a fashion no-no. Thankfully, baby buns are always in fashion.

Sleep Deprivation is a Crime Against Humanity

You may have noticed the brevity of my posts over the last 2 months. Bo was suffering from frequent and severe reflux (at night it was hourly at its worst, and during the day several times a day). Not to gloss over the torture of vomiting in and of itself, the experience of waking up to the sound of your fragile child gagging and crying at all is bad enough. Now imagine every hour on the hour. Now imagine every night, this torture, for 2 months. I was as close to losing it as I have ever been. Nothing, of course, can compare to the anguish and anxiety of being inpatient. Even if you get to "sleep" through the night. But I'd say this was a very close runner up.

And imagine trying to overcome an oral aversion when the least blip in the day or night makes you throw-up. Feeding therapy was just depresssing. And I was beginning to wonder if all that acid was going to tear a hole through his throat. And I was beginning to wonder if it was even safe for me to drive a motorized vehicle without supervision.

We tried everything. Magnet therapy, heightened sleep wedge, increased daily Zantac dose, starting Previcid daily, cool mist humidifier, prayer. I don't know what individual or combination of things did it, but something is working!

He has only been getting up 3-4x/night (these last few days). And I'm praying, please God, let this stay stable while I regroup my brain and my ability to concentrate and stay employed. And I'm further praising God for whatever reprieve we end up getting. It's a desperately needed break.

So many people are so bummed about all the snow. I just can't help smiling with my recently regained sanity. It's true, you know, prolonged sleep deprivation tactics are considered torture according to the International Warcrimes Tribunal. I guess if I'm going to be tortured, better at the hands of a big-cheeked somebody than anybody else. Now, to bed!

Last Sink Bath

I'm sure Bo's nurse and my mom-in-law will be happy to hear that this was his last sink bath. We've decided to torture him on other ways besides cramming him into an infant tub that he clearly has outgrown. Now we are in the big boy tub upstairs where even mommy and daddy take baths. It is more comfortable for everyone.

Hooray for milestones!

Favorite Library

Cold winter days mean no more playground playdates, but more impromptu visits to the library with the best kids section. Toys, trucks, books and a small house. And lots and lots of other kids. Yay!

Abundance, Joy and Love!

Dear Internet,

We wish you a year of abundance, joy and love!

Happy New Year!