This week has brought on big changes for our little guy. It was decided that it's make or break time for Linus. He needs to show his medical team what he's made of. The plan is to sloooowly and gently move him from his invasive therapies to a protocol he'd be able to come home on. If he can handle this, great, wonderful, stupendous, even. If he can't "fly", it's back to the OR he goes. No pressure, right?
He was extubated last Tues and although he's struggled a bit, he's been able to hold his own. They were able to graduate him off of the CPAP, which he hates, onto a high flow nasal cannula. This setup still gives him the support he needs, but in a much less invasive way. He's also had his Methadone and Ativan doses lowered a bit. He had pretty bad withdrawal symptoms for a few days. It was heartbreaking to watch him cry and thrash around. He was absolutely inconsolable during these fits and would usually require a PRN dose of methadone to calm him down. Then like magic, Sunday, he was "our baby" again. He smiled often and Trina even heard him babble a little for the first time since Feb. At one point he stayed awake for an hour straight. Even on this lowered sedation regimen, he usually he only comes around for a few minutes here and there. He's completely exhausted from having to breathe on his own. They've also been able to start a continuous drip of breast milk into his stomach to get his digestive system moving again. Over the past few days they've gone from 1 tsp/hr up to 3 tsp/hr. He's only vomited once so things are going pretty smoothly. The 2 daily issues we have with him are his fluid balance and his potassium. He nearly always retains too much fluid and always always has too low a potassium level. His daily chest X-rays show his lungs haven't changed much one way or the other. They're still "wet." He has an echo scheduled for tomorrow and I'm both nervous and excited to see what it might tell us.
Now that he's off the vent, we've been able to start physical therapy sessions. He has zero muscle tone. It's like having a floppy newborn again. When we sit him up, supported of course, he can't pick his own head up. His chin stays on his chest and his shoulders are slumped. It will take a long time to get him where he needs to be, physically, but at least we've started the journey. Over the past few days, he's started taking a pacifier again. This is a good sign, because he was outright refusing it after having the vent tube and/or an oral-gastric tube in his mouth for so long. This can lead to oral aversions which can translate into feeding issues. This wouldn't be the end of the world, but frankly, this kid has enough issues already.
Simon and Dexter are doing great. Their smiles and laughs fill me with joy down to my core. I can not get enough of their sweet snuggles. I could just squeeze them til they pop. :) Having them light up when I come into view is so good for my soul. They really make this difficult time bearable. Watching them play together and have little babble conversations with each other could melt the coldest heart.
These boys are nearly opposite in everything they do. Dexter caught up so they both have 2 teeth now. Simon drools relentlessly and Dexter may have a dribble every now and again, but nothing major. Simon sits like a champ and is getting more stable with his assisted standing. I've been working with Dexter on his sitting skills and he does pretty well as long as you hold his hands. He still has absolutely no desire to put any weight on his feet, so standing is a no go. Today Trina introduced them to sweet potato. Simon thought it was great and Dexter was wondering what went horribly wrong with his oatmeal. You know how they say that opposites attract? I think this may be the case with Simon and Dexter in the most literal sense. If they are anywhere near each other, they're touching. If they are semi-near each other, they find their way to each other, then touch. It's like a constant game of tag where they're both "it."
This is Linus with a vent tube. He's had this one and others like it breathing for him since March 11th.
This is his "snorkel." He absolutely hates this uncomfortable contraption.
This is the high flow nasal cannula. He tolerates it a lot better.
Simon was super excited about oatmeal time. Look at those teeth!
Dexter had oatmeal all over his face and he couldn't have been happier about it.
Simon can sit up like a big boy. Notice Dexter's hand on his foot, he's a spotter. :)
Dex may not want to sit or stand, but he does the "push up" position like a champ.
This is how they start out sleeping, on their backs with lots of personal space.
Less than 30 minutes later they're like a squishy baby yin yang.
Dexter: Hmmm, I sure would like to play with that giraffe.
Simon: Nom Nom Nom
Dexter: Here, let me show you something...
Simon: Ok, I suppose we can share. Nom Nom Nom
Dexter: Yes! Mine!
Dexter: Here, lets snuggle while I play with this.
Simon: OK, my fingers taste pretty good anyway. Nom Nom Nom