Three's a Charm

We think Bo passed his last of 3 kidney stones last night. He was pretty upset, but we were prepared. A small dose of Tordol and extra fluids seemed to hasten the process from several days to one. So, he had his IV nutrition (aka TPN), his lipids (the Omegaven that saved his life), and the lactated ringers (extra fluids) which meant that we had a triple splitter (Y-connector) hooked up to his catheter. The triple splitters we have are pretty cheap; made of thin plastic, so whenever he rolled over, it would clamp itself off and all three pumps would start alarming.

So we didn't get very good quality sleep last night. But it was still a hundred times better than waking up to him gagging, choking and retching. And we only had one night of this, rather than the 4-6 days the other two stones took.

Bo actually slept through all those pumps beeping. I guess he's used to it from all the nights he's spent in the hospital. He woke up in great spirits today and was so happy and cheerful all day. He is such a great guy!

Happy 9 Month Birthday!

We are officially out of the literature. Since there aren't that many recorded cases of MID, we're already working with a limited knowledge-base. But of those recorded cases, most of those stories tragically end by nine months. As of today, we have even less literature to reference for Bo. I won't say that we beat the odds, but that there are no numbers available to even calculate them now.

I went out and bought both size 3 and 4 overnight diapers, giddy with optimism.

In the Shadow of Bo

Another mom mentioned in her blog that the social worker warned her that some people in your life would withdraw from you when you suddenly find yourself with a special needs child. Another friend, who's currently fighting cancer said something similar about how some of the people closest to you suddenly disappear when you are in crisis, and some folks who might have only been acquaintances become your most indispensible companions. I've been thinking about this a lot. And grieving. I keep circling back to my last communication with my oldest (former) friend in town...

Dear Kinn,
We are really shocked and saddened to hear about this, I had no idea this happened to your family. Wife2 and I will be keeping you in our thoughts.
Buddy

RE: what's new?

Hey Buddy,
Did you go see Punisher when she was in town? I guess you haven’t heard about Bo.

So, when Bo was born in June, he was dehydrating very badly and not regaining his birth weight. He was kept in the NICU for 3 weeks, but the neonatologists couldn’t figure out what was wrong with him. So then he was transferred to the University of Michigan via ambulance, where he stayed for an additional 2 weeks. It turns out that he has an incredibly rare and life-limiting condition known as microvillous inclusion disease. Basically, he doesn’t have enough surface area in his intestines to absorb enough nutrients to live. UM docs said that he had a 25% chance of making it to 1, and <1%>

... I would trade this friend for Bo a million times over, if that is what the equation asks for. But does it? I am so sad about this loss. And so grateful for Bo. My heart still has this echoing ache when I look at Bo and think about how different my life is, the people I've lost, the goals I've modified, the empty space in my heart this friend used to live in. I am living "a life less ordinary." And now I really know what that phrase means, too. Bo has given me so much; all the world, a new life, hope, courage, friendship and joy.

Only, sometimes, breaking away from the old world into the new is just such a painful transition. And the surprising sources we find our sacrifices originate from can catch you off guard. These things all fall under the shadow of Bo. It is a little disorienting, a little lonely, a little scary... and then, this sunburst of abundance settles into your heart.

And there but for the grace of God go we.

Appetite returns with a vengance

I'm happy to report that Bo's appetite has returned with a vengance. Also, aside from the last stone, the nephrologist says that his renal system looks completely normal. His GI was delighted by his weight gain and big smiles and babbling so much so that we are increasing his volume (to ward off more stone formation) and decreasing his time on TPN.

Boo Boo was completely lovely and cheerful through both doctor visits and didn't even cry on the way home, even though he'd only had one nap. What a good boy!

Once we get the stone analysis and one more urine analysis, the GI will know how to adapt his TPN to avoid further stones. He weighed in at 16.25 lbs and 25.5 inches!

Near Miss

Bouncing from terror and devastation to relief and exhaustion, we spent the better part of Saturday at the emergency department, prepared for at least one over-night stay. Bo was inconsolable Friday night and I was finally convinced that he was passing a second kidney stone. He was in agony; much worse than the first stone even though that thing was 3x bigger, at least it was round.

I prayed. I cried. I tried not to hear his screaming and whimpering. My feet were searing hot with panic. I was exhausted, but only experiencing a fraction of the discomfort of this poor little baby.
I was so out of my mind in the week working up to this night, as Bo had not been able to keep anything down, and was gagging and retching each night. I threatened to get rid of Murray cat, that's how insane I was getting.

We found an arrowhead shaped stone in his morning diaper. I thought that would be the end of his discomfort, but he spiked a fever, who knows why, and it was off to emergency.

It is no secret that parents of special needs kids suffer a much higher rate of: divorce, depression, and substance abuse. All I wanted upon our return home was a stiff drink. Especially since the ultrasound showed at least one more stone he will have to pass. February has been pretty rough for Bo. Jose and I have had our share of sleepless nights, but it is not hard to remind myself that he is the one in pain. I'm just relieved we haven't had to stay at the hospital and expose him to all the MRSA, flu and infectious diseases floating around this time of year.

He slept 13 hours straight last night, had a 2.5 hour morning nap, and is currently 1.5 hours into an afternoon nap. Hopefully all this sleep will help him recover from a thoroughly exhausting week. And while I am grateful to avoid being in-patient so far for the month of February, passing two stones in one month is hardly what I consider a break.

Lunar Eclipse Madness

Bo has been acting annoyed and whiney all day. He only took a few very short naps (read: not enough day-time sleep), and then yelped out each time I put him down (that would be 4 times) for the night. Usually he has 3.5-4 solid hours of napping during the day, and goes down like a box of rocks by bedtime (under 10 minutes of soothing between 6:15pm and 7pm).

I realized that the source of all this angst is the extra darkness from the total lunar eclipse. He thinks wolves will sneak into the house and spirit him away, and that they will get away with it under cover of the extra darkness. Thankfully, these lunar events only happen every 3 years.

PS the wolves did not make it into the house

Debunking the Parenting Myth: not really reading it

It's only been a few short months since Mr. Squishy was born (thanks, nanimal!), but it seem like... well, I can't tell you what the last eight months were like, because I hardly remember.

And I feel like a heel, but to those of you I haven't spoken to since before the baby was born, I really do miss you, I might even be mad that I haven't heard from you, but I also can't remember the last time I tried calling someone (I'm changing a diaper/putting him down/waiting for him to wake/preparing a bottle/too tired to find my phone/found my phone and it's now midnight). So we can call it even. Except now, I have memorized the content of 30+ board books and have started improvising. I can change a diaper in complete darkness, as well as hook the baby up to his IV under the same circumstances.

He tried his second solid food today, avocado! And had his Omegaven bumped up. His TPN calories will get a bump tomorrow, and we will get a new weight/height measurement next week. None of the doctors seem overly concerned about the stone, as unusual as it is. But we will plan on getting an ultrasound done soon (maybe in March) to see if there are more to expect.