3.30.06: the roller coaster ride continues

This update is a little overdue, partly because we've been a little more consumed by figuring out what is going on with Avery and partly because I've been really sick for the past couple of days.

Avery only lasted 12 hours off of the ventilator after he was extubated on Saturday night. His CO2 level climbed to above 100 overnight, which is well outside of an acceptable range, and he had to go back on the vent around 6am on Sunday morning. Given how well he was doing Saturday night, we couldn't believe how quickly things turned around.

It turned out he had a bacterial infection and he was immediately put on antibiotics, although there was still speculation that he might have an obstruction in his upper airways. We've done a lot of research this week on subglottic stenosis and a procedure called a cricoid split. After Avery had a bronchoscopy done this morning, we are less worried. It seems as though his airways look pretty unobstructed, ... just some minor swelling.

Avery has spent all week on antibiotics and resting, back on sedatives and pain killers. His nourishment has been slow this week due to an inactive digestive system. Yesterday, he was taken down to radiology where with the help of ultrasound, they inserted an NJ tube (as opposed to the NG tube he's used to). This bypasses the stomach, the pyloric valve and the duodenum and reaches into the jejunum. He's been able to consume more formula since the change.

At around 11am this morning, Avery was extubated once again and as of 9pm tonight, he's doing well. His effort to breathe looks good and all his numbers are in an acceptable range. Maybe he's heard the word tracheostomy too many times over the past couple of days. Last time he was threatened with a trach, he decided he was ready to breathe on his own. Perhaps that's all he needed again this time.

So, we'll be holding our breath again while we see how he does. We really miss having him home and with Mason. We all miss each other so much right now as we continue to take turns at the hospital. I haven't been to the hospital for two days, but I hope I'm feeling well enough tomorrow morning to finally relieve Mary after her long stretch away from home.

As for Mason and his little surgery Monday, all went well. According to the ENT, he had a lot of fluid behind his eardrums. It seemed to take him a little while to adjust to sounds and probably the release of pressure in his ears, but he really didn't seem much different. It appears as though his balance may have improved a bit after the procedure.

So, for a while, he was getting drops in both his ears and eyes (which is quite the challenge for one person to do). Thankfully, for him and us, we're "all done" with those (as you can imagine, "all done" is increasingly becoming his favorite baby sign).

Now, we're all ready to say "all done" to the hospital and get our little champ home. At the very least, it will be a few more days.

Here are more shots from February, before the boys got sick. We can't wait to have them back together again.