Update 08/26/12

Ryker has had an incredible couple weeks!!!

On Friday August 17th Ryker got extubated & he did amazing!!! Best he has ever done with extubation (he is becoming a Pro!) Right before extubation they did a echo (they have been doing them weekly since his last cath) & everything looked the same if not "a hair better" than the last echo. So that was great news! After extubation they put him onto something called "Bubbly CPAP" to aid in his breathing, he was on that until the following Tuesday when they moved him to a regular nasal cannula on 2 liters of oxygen, where he still remains right now & is doing great & satting in the high 70's to low 80's (right where they want him pre-glenn)

I have (& everyone else in the hospital that knows him well) been SO happy with how well Ryker is doing since extubation! His color looks great (nice & pink), his numbers all look perfect & his eyes are just glowing! His favorite Nurses & Doctors are continually stopping by just to see him because they have heard from others how well he looks:) I feel like I have my sweet happy Ryker back FINALLY!!! Except that he is a lot bigger!!! :)

Today Ryker weighed in at a whopping 5.088KG which is 11 lbs. 2oz I am SO excited about this!!! Dr. DelNido would like Ryker to be at least 6KG for his bidirectional glenn procedure so this is just one step closer to that! I am so so proud of him! They also started his feeds back up again through his cool new G-Tube :) I love this new thing (although it is a new incision sight & foreign object in his body) it is so much better for him so he doesn't have to have 4 tubes down his nose all at once & try to breathe all at the same time. They are taking his feeds extremely slow so he is only on 6ml per hour of continuous breast milk & he is doing great with it!

The only concern I have at all is- Because Ryker was intubated orally the last two times he has no interest whatsoever for his binky or bottle :( The two things that used to be his absolute best friends! I cannot say that I blame him, if I had something shoved down my throat for almost a month that I continually gagged on, I too would not want anything in my mouth either!! But needless to say this breaks my heart & worries me at the same time. They at first were saying that he has something called "oral inversion" which basically means that he wants nothing to do with anything going into his mouth & gets extremely upset if you try, but after the feeding team came yesterday they said he doesn't have a full blown oral inversion because he doesn't get mad about things going in like some kids, but he doesn't love it like he used to, so it will just take a lot of time & patience to slowly get him back to bottle feeding again. So he will be back at it soon! :)

Here are a few pics of the last few weeks-