Saturday Evening - A Josiah Update

(Josiah @ 9:30 AM Wednesday, May 9th)
... gee ... I'm looking awfully stoic ...

(Josiah @ 4:00 PM, Tuesday May 8th)
... the amazing mom at work ...

(Josiah @ 6:30 PM, Wednesday May 9th)
... have I put up this pic yet? I don't think so ... our sleeping beauty :)

(Josiah @ 8:00 PM, Sunday May 6th)
... ah ... the family shot ...

(Josiah's G-Tube @ 2:00 PM Friday, May 11th)
... and believe it or not, they call that 'noninvasive'

(Josiah's Trach @ 10:00 AM Friday, May 11th)
... black = silver nitrate dressing (which is the size of Josiah's ulceration - YUCK)

Hello Guys & Gals

Dang. My laptop just froze on me and I lost my nearly completed post. Phooey.

Sorry that you had to wait 24+ hours to see some new pics. Yesterday ended up being a full day and at the end I wasn't interested in blogging.

So Josiah's had a pretty good day. It seems that his abdomen is less sensitive and is secreting less post-op ooze. He is now on bolus feeds (fed for a hour, nothing for two hours, repeat) which is a lot nicer than continuous feeds. Next week we might do a swallowing study with Josiah to see how is mechanics are doing. We are encouraged because he is obviously handling his saliva, but his body (epiglottis) may respond differently to different textures so we'll have to see what happens.

The G-Tube probably looks really big to you. Well, that's the size they need for an infant. In a couple of months the doctors will be able to switch over to a button, so it won't be a disc-tube-connector attached to him, but a little valve that sits no higher than the disc and isn't as wide. Also - neat to know - in a couple of months the abdomen stoma will be pretty much like an earring hole and you can just pop in/pop out the g-tube. Crazy, eh?

Obviously our concern is still the ulceration at the bottom of his trach stoma. Did you like the picture?! Yikes! So that black-silver stuff is the silver nitrate dressing that is put into the wound tract to help the ulceration to close up. The problem is that Josiah still gets secretions through that ulceration, so the dressing needs to be changed three times a day rather than the every three days its supposed to be done. This is a problem because the silver nitrate isn't left in the wound tract long enough to do it's job, so we're definitely praying for some healing there.

So, the greatest stress right now - other than the ulceration and mentally mapping out what life outside the hospital could possibly look like - is learning how to assess and respond to Josiah's needs. Today was a good lesson in trying to figure out what to do when he's not able to exchanged air like he has to. Do you suction, do you wait, do you give him oxygen, do you re-position him, do you call a nurse? So mentally and emotionally draining. But he got out of that little funk just fine, though Marie and I will be gray by 30 I'm sure ...

Oh, and a great 'highlight' for the day: earlier in the morning Marie and I mentioned to the nurses that we thought Josiah might be getting ill since he was needing more suctions than normal, was sounding stuffier than ever, wasn't coughing forcefully like he used to, and needed a boost of oxygen. Well, later when I was holding him he coughed hard on two occasions: both times he got it right out of the trach - no need for a suction when he gets it out on his own! - and the last one he sprayed me a little on the cheek! That's the stuff parents like to see, their baby hacking a loogie on them! :D

Thanks to Uncle Chris, Aunt Pauline, & Ashley R. for swinging by yesterday evening. Thanks also to Aunt Betty-Lou & Meagan H. for dropping in this morning. They are experiencing some good 'unofficial practice' since they want to learn trach care for our guy.

In God's Peace.
- Andrew, Marie & Josiah