Looking Back, Leaping Forward

There was a relative lull in the blogging action when one of the three other MID babies we know of suddenly passed away from transplant complications. This may seem odd, but for those of you who have ever suffered the agony of a close friend or family's medical complexity, you may understand that we felt her death was as if she were part of our family. And at the same time, we were watching our amazing Bo struggle with and command new milestones. And we can't help but think that we could have so easily been in that other family's situation. But for the Grace of God, go we.

And here, the marvelous birthday cake Jose's mom made for Bo in June (yes, I have a backlog of pix). And Bo himself.

No Rest for the Weary

Bo's potassium has dropped again. We will try and manage from home. They are sending a special bag down from GR and the nurse will draw him again tomorrow morning. If there is no improvement, he will get admitted to the hospital in GR where his GI is the attending.

The consolation prize for you readers is a pic of Bo reading with his nurse. I guess one book isn't good enough. He's reading 2 at once!

Normal Labs and HOME!

Bo's labs were normal this morning. Jose and (hopefully) our home nurse are packing things up. He will have another draw on Wednesday and probably a follow-up visit with the nephrologist in GR. Thanks to all for your comments, emails, calls and prayers.

6pm labs

Potassium is coming down nicely, but his bicarb has been low this whole weekend. Which is funny because it was high all week beforehand, and high when he was admitted. Another draw in the morning and hopefully at some point he pees for the urine electrolytes analysis. Jose will protect the baby's sleep and I will go home to cats to prepare for work.

The Long Road Home

Looks like a long weekend here. Bo got admitted Friday night with low potassium. They overshot the mark, and now it's too high. He will have labs drawn at 6pm and 6am with the hopes that it will have stabilized within the normal range. But meanwhile he's been off his Omegaven and TPN since Friday night. I fought to keep the Omegaven Friday, but he's been off everything since last night and I think he's getting hungry. But they don't want to restart the TPN and lipids until they are sure of their calculations for the amount of potassium and sodium acetate to be added to his formulation. He had a three hour nap and still looked strung out. Now, 2 hours after waking, he's napping again. I'll ask them to run blood sugar too at the 6pm lab draw.

I would like it very much if someone could please just shoot me, now.

A gramma in the playroom told me that she thought Bo was 6-7 months old and would never have guessed that he was 14 months old. I felt like such a loser. "But," I kept thinking, "his outfit says 12 months!" What is wrong with me? Yeah, cuz my very next thought was, "um, you're here because your grandson's face got nearly bit off by a pitbull." Nice. I should probably go to mass tonight and ask for a little more grace in my heart.

Inn Update

Potassium levels are normal. Hemaglobin rising. All's well. We're here for a night of observation, and if Bo behaves, home. What a way to spend the weekend. Everyone slept soundly and well!

Bonus! We get to take him off the floor and outside, says the resident!! Without orders, we are trapped on the floor, literally walking in circles. Or we could try to take him out with his baby LoJack on his ankle and start a Code Pink, with hospital SWAT team and helicopters, horns and police.

Long Time, No Blog

First, the good news. Bo's Anat Baniel Method lessons were pretty amazing. He had a cluster of 3 in 2 days. Within the first half hour of the first lesson, he sat up on his own. Jose was skeptical, saying that he was on the verge of doing that for a while, now. I was amazed, saying that he, nonetheless, had not yet done that on his own. But this teacher is too far away. We are going to try a Feldenkrais body worker in town who trained with my sister-in-law's chosen family from Chicago(!). She is also Chinese! So this may be really awesome. I hope. I hope.

The bad news. I am typing this from the Bronson Inn. A pull-out couch that lays flat, private room with bath, free wifi, free parking and all the diet Sprite a girl could ask for. No contest to sleeping in your own bed/crib. Bo's potassium dropped too low for comfort, so here we are. No explanation, no theory, no real data. But he's getting infused with fluids and potassium and this is the most peaceful sleep he's had in 3 nights. Translation: probably the quietest night I will have had in as many nights (except for the nurse coming in every 4 hours to take vital signs).

And in the funny papers: I took Bo to a NASCAR event. Now I know why this is the most popular spectator sport in the USA. You can bring your own cooler of beer. Seriously. Well, needless to say, I broke into hives from head to toe, and Bo cried for half of the 40 minutes we were there. Work events really can broaden your horizons.

Love to you all,
Kinn