Our Spring, so far. (An update on Paulie G.)

A little update on Paulie's adventures these past couple of weeks. I start more updates than you might guess, and just never know how much info to share. I have now written and deleted two entire posts just right now. Let's try this again...

Nobody puts Baby in the hamper! (signing "All done!")

Two weeks ago, Paul was inpatient in Boston to treat a serious fungal infection at his g-tube site. He responded immediately to treatment, and we came home Saturday night (two Saturdays ago) after a two day stay.

Then... we brought Paul to the ER in the middle of the night Wed/Thur last week, because while we thought he'd been having an autonomic storm all day, his symptoms became very concerning at bedtime (along with increased heart rate, some work of breathing and a temp which on their own wouldn't be alarming, his hands and feet were purple and he wasn't responding well to us.)

First we thought respiratory virus, and headed to Boston. Then his neurologic picture worsened 10 minutes down the road, so we thought shunt malfuction and headed to CCMC.

We got the big room in the ER. Again. Shunt malfunction was ruled out, and they treated him aggressively for apparent septic shock. Meaning. Massive infection that is overtaking the body with inflammation and threatening to shut down organs, leading to death. His g-tube site was the presumed entry point.

I was told by our nurse case manager, who spoke with the ER charge nurse, that she thought my baby was dead when we came in. And the team working on him thought he was going to die. The doctor was visibly shaking. (Yes, it's ok for her to tell me this, it was in context.) Frank and I were scared, but we've been in these situations so many times in the last nine years. We don't shake very much anymore, for whatever reason. I tell you because it's part of the story, part of our reality, and part of the picture Mom saw when she came over. She gets a front row seat to a lot that goes poorly explained.

His blood pressure was stablized with IO bolused fluids (intraosseous access versus IV/intraveineous, a first for us, where fluids are pushed directly into his thigh bone because they could not get access to any veins at that point. THAT I had to leave the room for, ugh. Though apparently it feels about the same as an IV). And eventually his extremeties started pinking and warming.

Finally around 6am with a little help from me hoisting up his very weak arm up, he smacked Frank in the head. And he managed to oh so weakly sign "Sesame Street." Ah, our sweet, perfect boy was coming around. They started IV antibiotics, and sent us to Boston at 11am. Via BLARING ambulence. Just part of the ride, my friends, just part of the ride.

Paul was better Thursday during the day, and each day after. Just very, very tired, and pretty despondent to be in the hospital again. Cue round the clock Sesame Street.

We came home on Sunday, at which time not a single bacteria had grown from a single culture.

Was it septic shock? We don't know. If it quacks like a duck, right? Except, Paul. So.

Thanks for the constant help and prayers. We wouldn't trade this life for anything in the world. And that's the truth.

(When we went to school a few weeks ago to spend the day with Luca, this is what rolled out of the nurse's office as we signed in at the front office. THIS kid is OURS.)

(Except that not so secretly, he's not.)