From Charlie’s private Facebook page (yeah, he’s that cool!)
UPDATE APRIL 12:
Overnight Charles began waking up and opened his eyes (yay!) He aspirated some of some of his feeds, which is not uncommon since he had been so heavily sedated, the gag/swallow reflex will improve as he clears the meds from his system. He only started being given my breastmilk yesterday. He is responsive to pain. His eyes were tested for stimulus response and we should have those results tomorrow.
When I went in to visit him and participate in rounds this morning, as soon as he heard my voice Charlie became very alert, opened his eyes and turned to look at me. We spent about 30 minutes talking to one another and playing together. That he is moving his limbs on his own and is so responsive is EXCELLENT news for his long-term prognosis.
Since I had to have a lung scan yesterday (that’s another story!) I could not stay long near Charles. I am literally radioactive due to the dyes they had to inject me with. I’ll be “clear” tomorrow. I have to discard my breast milk for the next 24 hours as well because of this (any pumping mamas know how upsetting this is! my levels are amazing though so we’re not too concerned). Charlie’s nurse yesterday was incredible and let me hold him for 10 minutes – I hadn’t been able to hold him since he was admitted on Saturday. This made both of us VERY happy! His stats went perfect and my stress levels dropped big time. Hopefully we can do more and more kangaroo care as the days go on.
They are going to increase his feeds by 2mL each feed (every 3 hours) today to see how his body tolerates it. They want to challenge him to see how he can handle “normal” baby things, but if it’s too taxing we might hold still temporarily.
Charlie is on a medication call phenobarbital, this stops him from having more seizures. He will be on this medication for some time. His blood was tested for phenobarb levels last night and they were a bit high (which could be the reason for the slight feeding difficulties). He was receiving 2 doses/day, but last night they transitioned him over to a single, larger dose given at night. This makes him sleepy. They will adjust his dosage accordingly, as we want him to have therapeutic levels only and not much more, so it doesn’t depress his other systems.
Charles is currently on low-flow oxygen, but his nurse says it’s such a low dose it’s basically air. Some babies just like the feel of it and so will resist weaning for a bit. He’s probably going to be off in the next day or so.
As of now, we are just taking things day by day. The more Charlie does “normal” baby things, the better his prognosis. By the end of the week they’d wanted to see him responsive, alert, and feeding. So we’ve almost hit all those milestones! We will be at Sick Kids for at least another week. How quickly Charles hits his milestones will determine how quickly we can bring him home.
The full extent of Charles’ condition won’t be known until he is school-aged, and Sick Kids will follow him through the first 2 years of his life to ensure he’s hitting his milestones and getting any necessary early interventions.
Little D has been such a great big brother through all of this – we are very proud of him and his concern for his little brother. He is a great listener and helper, and he’s just as excited for us to bring Charlie home.