Third time's a charm?

Ford is down to only one IV now, although it's his pic line, so it's like an IV on steroids. He's only getting two medications via infusion - Milrinone and Midazolam, and a whole lot of food (relatively speaking). He's still on a host of other medications that they are administering at certain times throughout the day. I've been meaning to write a comprehensive list to post up here, for anyone who has the insight/interest to figure out exctly how they are keeping our little guy running (I know there are some pharmacists in the family, although I'm not sure if you read the blog).

As far as food goes, he's up to 12ml of breast milk an hour (increases by 1 ml every 8 hours), which is the highest it's gotten to so far. But everytime he throws up they stop feeding him and restart him back at 1ml/hr. Sounds like punishment to me, to get your food taken away everytime you misbehave, but apparently it's for his own good (classic disciplinary parenting tactics). So far it's been advancing in fits and starts and we are pleased he is doing so much better with it now, despite hearing each morning that he is loosing weight (down from 4.2kg to 3.8kg).

Update on the diaphragm is that it's still partially paralyzed. While the usual course is to wait it out for at least 6 weeks for any signs of self recovery, in his case (in the case of HLHS kids) they can't afford to wait that long. I'm not yet sure why. So this morning they delivered him an ultimatum: cope with extubation or go in for surgery.

This afternoon was exciting and stressful and sad and overwhelming and far too busy, but a lot has changed since this morning and some wonderful milestones where reached. Since the plan was to extubate him for the third time today, they had been carefully weening him off the vent to the point where he was basically breathing on his own. And then they waited for several hours, as opposed to the last two times where they quickly weened and then pulled the plug. Funny thing was, as Christa was rocking him in her arms he decided to puke on her (milestone #1 - a benign puke on mommy, so he still gets his food) and then start making his awesome Exorcist noises (wheezy grunting). Apparently he was starting to breathe around the intubation, which I gather was kind of startling for everyone who witnessed it - I did not. So they decided that he'd made the call himself this time and promptly extubated him right there in Christa's lap.

In the past he's fought like mad against it, but this time he's doing really well. With a minimal amount of fuss he was put onto CPAP and comfortably put to rest in his bed. He's been sleeping for the last several hours and they have managed to ween him back to room air already (when they switched it over they upped his oxygen to 30%). Last time they extubated to CPAP he required upwards of 60% oxygen almost constantly, which they were unable to ween - this gave rise their observations that he was 'hanging on by his fingernails'. In addition his respiratory rate has stayed in the 30s - 60s, which is good for him (it was up in the 70s-80s last time), and his blood gases looked unstressed.

When I left to come and write this he was just waking up and despite everything he'd been through he seemed genuinely happy. He was yawning alot, had a bout of hiccups, and was really getting his rocks off on his soother. He was clear eyed and calm and that's certainly milestone #2 for today. He wasn't comfotable at all the last time they extubated him and so they basically sedated him the whole time. That he seems in good spirits is pretty exciting as we are desperatly wanting to avoid another surgery. So please send him all your good breathing thoughts over the next few days as they are pretty critical for him. We are not really going to celebrate this until they wheel the ventilator out of the room. He could loose the fight again at any point.