Thursday, October 22, 2009

my girls



ChIRP clinic yesterday

   Ryan's weight: 16 pounds 12 ounces (10th percentile for an 8 month old-actual age. above the 50th percentile for a 5 month old-adjusted age)--doing great, gaining well over the minimum just on enteral feeds (belly feeds, no iv nutrition).

Docs spent most of their time playing with Ryan, who had just woken up from a 2+ hour long nap and was in great spirits.  We are going to start to work toward getting his time off the G-tube up so that when he becomes more mobile, we have less cords to deal with.  He had to get blood drawn without his Broviac line and it was pretty awful, but short and he's totally over it.  He did great.  We don't go back until January.

Friday, October 16, 2009

Bye Bye BROVIAC



We love the broviac for keeping Ryan alive and remaining infection-free.  We hate the broviac for what it stood for: necrotizing enterocolitis, infection risk, loss of normalcy, crushed hopes and expectations, the looming liver failure that would happen if he remained on the intravenous nutrition long-term.  not to mention it's ugly and required a ton of maintenace:



By a true miracle, Ryan is able to thrive without the intravenous nutrition which was provided by the Broviac line--this was beyond anyone's wildest imagination, truly.  We are so thankful.  The Broviac line came out on Tuesday October 6th after Ryan had gained great weight for the 10 days prior--it was also showing signs of clotting off, so it was perfect timing as it looked like he might need a new line anyway if he were to continue depending on it.

We took him in for surgery at 7:45 that morning.  John took a 1/2 day off from school.  Nora came with because her food supply (mama) went.  I was really worried that Ryan would freak out since I had to shut his feeding pump off at 4:45--he did great.  he was awake for his pre-op assessment and then fell asleep in John's arms at about 7:30, pacifier in mouth.  

The surgery was for the removal of the Broviac, a replacement of his Gtube, which has been giving us trouble lately, and cauterization of some problematic granulation tissue around his Gtube site.  All went well.  Everything went so fast that they just needed to use the gas mask to get him to hold still--no breathing tube or anything.  About 20 minutes after they took him back, we were called in to get him in recovery....I could hear him down the hall.  He was furious, panicky, hungry but quickly calmed down with a bottle and some snuggles.  We were able to bring him home a few minutes later without any trouble....Gtube site looking much nicer and leg line-less for the first time since he was 3 weeks old.  After 2 days, we took the bandage off and a few days after that, the steri-strips fell off and he's left with just a small scab on his thigh.  it's lovely. and his skin can breathe now that the plastic occlusive dressing is off finally.

So one week later, Ryan got his first real bath.  Previous baths were just wash cloth wipes because the Broviac and it's dressing needed to stay dry at all times.  And, this boy needed a bath.  He was horrified at first but then settled in to the bath with the help of  a toy for a distraction. pictures are a bit yellow-y looking from the bathroom lighting.






Wednesday, October 7, 2009

baby boy giggles

video
we all love to hear ryan giggle.  he will giggle anytime he is roughed up--such a little boy.
Broviac line came out yesterday--I want to take a picture of his plastic-less leg, but it's got a nasty looking bandage on it for the next 2 days. Next up: a real bath!  I'm pretty sure he'll love it.

Thursday, October 1, 2009