|Yup, our kid gets Panasonic Phones for Christmas!|
|Grandma and Pappa|
So Christmas Day was interesting due to the fact that they extubated Braeden that afternoon! We had talked about it the day before and the resident had said it would be in the next 7-10 days (pretty sure that didn't mean the next day although it fell within the parameters!). Once they get something in their mind though it gets done it seems. Braeden had been suffering along with a very large leak in his tube (which means it doesn't sit snugly between the vocal cords and air escapes, hence the nickname Squeak) that was upwards of 75%. He was basically breathing on his own since the majority of his air being pushed through was escaping anyhow. I had no objection to the extubation, he'd been on it for far too long but they couldn't extubate earlier due to the severity of the swelling that if he'd had an issue with air they would have had major issue re-intubating. I wanted to be present for it as I hadn't been when they extubated at Foothills and then upon watching it I changed my mind. It is an entirely unpleasant experience to watch your child turn blue while gasping for air like a fish out of water. They place him on high flow nasal prongs right away but it takes a whole lot of getting used to when you've had air forced into your lungs for several weeks up to that point. He did a pretty great job but was working very hard to take each breath and was fairly agitated by it all, as would anyone gasping for air. The longer a baby can maintain themselves off the vent the better the chance they have of staying off it and I'm proud to say it has now been three days! Superstar! He is breathing much better now and not working nearly so hard. He still gets quite tired and they need to crank him up again once in awhile but for the most part he is sitting at 30-40% oxygen (normal air is 21%). It was certainly not easy leaving him that first afternoon though, just knowing how hard he was working for each and every breath.
I should backtrack by saying that Braeden's last MRI that was done on Christmas Eve day was very positive in the fact that it showed NO further stroke activity. It did show that he was prone to seizures (not a big surprise there, been there done that) but the truly wonderful thing is that the Neuro reported that his brain function came across as more mature than what she would have predicted especially with his small brain size. Any piece of good news is welcome!
I am extremely hesitant to say this but it would seem and feel as though we have turned a corner (I suppose it might be accurate to assume there are many more corners to follow), as Braeden has started to lose weight, somewhat rapidly. I was actually able to cup the back of his head when I held him on the 26th! I was so stunned when Barb handed him to me, he was so tiny again. He'd lost 526 grams in a 24 hr period (that is over one pound). He gained back half of that yesterday but it is how this kid seems to roll. I didn't realize they had given him some 'super' doses of lasiks (diuretic) and they seemed to be working. I was so happy that he was stable enough to be held after being on the nasal prongs for only one day. He lay on my chest and at one point I realized it was very quiet. When I looked down at him I realized he wasn't fighting for his air, he was sleeping so deeply that he was simply breathing. I knew he could do it! We had an amazing cuddle for over two hours and we both felt a whole lot better because of it. It is positively terrifying for me to have feelings of positivity and excitement with Braeden as we've been through SO much in the short seven weeks of his life. In many ways we sit with bated breath waiting for yet another shoe to drop (how many shoes does one have anyhow??), due to the constantly changing stream of issues he's had. He is outputting great amounts of urine (thanks to the 'super' lasik) and losing weight and for the first time ever, on his seven week birthday, he opened both of his eyes and checked me out! Pretty damn good seven week birthday present! Take a moment and think about that, seven weeks it took to see my child awake and alert, it is simply quite shocking isn't it? He is slowly having 'awake' periods now and doing baby things like, "hey nurse, my bum is wet and I'm hungry dammit!". We are cautiously optimistic now about his progress forward, this is a good thing. They are also in the process of dropping off his Morphine and taking him off the Phenol Barb med (for seizures) while raising his level of Ketamine (other seizure med) with the hopes of losing the 'sleepy' side effects of the Morphine and the Phenol Barb. They have to take it very slow with the Morphine as he's been on narcotics since birth.