Long Time No Post

Apologies for the all text post. And the great delay in posting. There's a lot of catching up to do.

Spoiler: everyone is physically stable, doing a lot better emotionally, and just deep-sigh relief.

Details below:

The good news is that Bo's ramp-up to the terrible twos has him pretty much on par with his peers. His OT was just over for a home visit, and she was all, "Um, why am I here, again? This kid is SO not delayed." Jose was all, "Can you just play with him for an hour? He's sick of looking at me." He started potty training last month and is about 60% good. Woohoo!

He had his broviac (central line) replaced a few weeks ago. It stopped running in the middle of a Feldenkrais lesson, which we had to cut short. At first I thought it was a kink in his line, as they were horsing around. I unkinked and pulled straight every centimeter of line. I turned his pump off and on. I probed the insertion site. Nothing. Beepbeepbeep. "Down occlusion."

Of course, it was on the weekend, so we had to go through the ER. There are 2 pediatric surgeons, the one who fixed Bo's line when it sprung a leak last fall, and the one who saw Bo during this past ER visit. He was pretty cautious and conservative and was trying to brace us for worst-case scenario: "he might need emergency line-replacement surgery, radiology might not be able to clear it manually, if we run TPA into the line after radiology fails (drano for lines) then we'd have to wait several hours before being able to start surgery..." Oi vey.

Long story short, I put Bo down for his nap in the radiology suite, and the radiology team was able to manually unclog the line by shoving a wire through his line. Amazing. Both technically and emotionally. I could not believe how sweet and patient they all were. The Rad-doc and his techs just chilled in the adjacent computer room for like 20 minutes as I lulled Bo to sleep.

As the surgeon was discharging us, he admonished us to not go too far afield and that we needed to call and schedule replacement surgery as an out-patient procedure, that is unless we really wanted his line to get replaced emergently. Yeah, it's not hard to make a good decision when your options are spelled out like that for you.

We did go to Chicago several days later, as I had a work event. So we had a long weekend in Chi-town, and his line did occlude in the middle of the night part way through the weekend at 5AM, but I rolled his chubby butt over and it started running again. Big sigh. As you can imagine, I called at 9AM the following Monday to schedule the surgery.

We managed to have a great long weekend visiting with Tio Ren, Aunty Jennie, and Uncle Brian. I managed to do some power shopping (yay!) since I'm finally replacing my pregnant and pre-Bo wardrobe. It's still a struggle finding ways to love my mommas-body. Sigh. A work in progress.

His 2.2French Broviac placed at 3 weeks old was replaced at 20 months with a 4-something french Broviac. They warned us that they might not be able to pull the whole line, if the tip was encased in too much scarified tissue, and that foreign body would have the potential to host biofilm and bacteria and increase his chances of sepsis (not good). Well, the surgery went great, they pulled the old line no problem, and even though the new line has a bigger diameter than the last, both are actually so small, that the protective outer sheath is the same size. It looks exactly the same except on his left chest instead of his right.

Before the surgery, he was 80-85% for the potty training. Needless to say, he has regressed a bit, but is getting back on track. Even though this is a much longer process than most, and probably could have made it a shorter process if we waited a bit longer to start, the benefits to his butt were evident from the first day we started. His diaper rash is almost a non-issue! I can't believe how much diaper cream and cloth diapers we had been using daily!

Of course, my parents wanted to see him after all this excitement. So they decided to come for a visit last weekend. Which leads us to...

The bad news. My dad had a heartattack on his way into town. Luckily it started just as he was getting off the highway into town. And our house is literally a few miles from there. So we hustled him to the ER and they had 2 stents in him and up to an in-patient room within hours (!). I was pretty mad when I realized that both parents neglected to pack his even 1 of his 8 nitroglycerin tablets. He had bypass surgery 8 years ago.

And since my sister thought he was dying, she booked a flight to Michigan, so she's getting into Metro about now. And this whole time, I'm working on this huge project (nights, weekend, all the time). So I'll take a few days off and bring Bo to see my dad this weekend. He's still recovering from the episode, and I guess you have to be super careful the 8 weeks post-event to maximize the cardiac tissue recovery. They say whatever you've lost after that is pretty much gone forever.

Ming will return to Colorado this weekend, as Tung flies into town. I'm hoping my parents can tear themselves away from Ann Arbor. It's just too far from me, under the circumstance. And I know they'll miss it there, but I think it's time they moved to the 'Zoo.

Jose and I are having a double date with some old friends in town tonight. Saturday night we're planning to go to WIDR's dance party down the street at The Strutt and then onto a new friend's birthday party at Fire (local art collective). Sunday, I'm in church almost all day (!) and get formally welcomed into the Catholic church by Kalamazoo's very own Bishop! OMG, I never thought I would be this excited about church. Seriously. We'll pack up and cruise over to A2 after that and hopefully return home Tuesday afternoon.

In the background: I've got 2 huge work projects over shadowing my every move, and a seemingly unmanageable remodeling project at home to start (getting a proper studio built for Jose). The days are getting noticeably longer (hooray!) and this is the longest stretch we've gone without having to sit with Bo in-patient (touch wood). I'll post pix tomorrow night.

Blessings!

The Fastest Speed Walker in Town

In the space of 2 months we went from sitting and creeping/cruising around furniture to a non-stop blur of constant motion. I've considered shifting my bedtime to coincide with Bo's. He's wearing us out, but in a good way, this time. And he had so much fun visiting with his Tio, Aunty Jennie, and Godfather! Despite the cold, we all had a great time. We even caught the very beginning of the New Year's Parade in Chinatown.

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!