Friday, April 22, 2011

New Mic Key button

Nick had his g-tube placed yesterday and they used a mic key button, which is a pretty standard feeding tube they use now. It's pretty small and hopefully it won't get in his way of tummy time or swimming.
He had a rough time with his oxygen levels again after surgery, they had to do a couple breathing treatments and he was on oxygen for about 6 hours or so. He sounds very hoarse, from being intubated but we're not sure if that's why his oxygen levels were low or it was the Fentanyl they gave him. Either way he is better now and we're using roxicet now to help with the pain and that seems to be doing the trick without his O2 sats dropping.
Hopefully we will be going home today, I don't want to say we will be and then we don't cause that would really stink!
Right now we're just working on getting him back up to his normal food amounts and then I'm sure we'll be out of here.
Here's some pics and a video of before the surgery!
Right after surgery:




video

Monday, April 18, 2011

Please please please don't get sick!

So this past week Ben has been sick with a runny nose and a slight croupy cough.....ugh just like the week before Nick had his last surgery, then ended up having RSV and seizures. We are trying to keep him away as much as possible but that's pretty IMpossible. I think Nick has a runny nose though. It's hard to tell with him because there's no palate to guide the snot down and out his nose, it just drains into his mouth and down his throat. He's been very gaggy this past week and has thrown up a couple times, twice he's thrown up his tube at the same time. But this morning immediately after he ate he threw up quite a bit of bright yellow stuff. It scared me quite a bit, only because he had just eaten. I ended up calling the nurse line and they said he should probably be seen, just in case. So we took him to the Children's ER and he was fine, thankfully. The doctors think maybe he had a stomach bug or the drainage is making his stomach upset. But the yellow stuff was just stomach acid and it's not a big deal that he threw it up after he ate. Thankfully, he's completely fine and we are still scheduled to have his g-tube put in on Thursday. Hopefully we can make it to then without getting sick.
Please pray he doesn't get sick and that the surgery will go well and we will be home in plenty of time for Easter!
Here's some CHUBBY pictures!!


Sleeping with Daddy

Monday, April 4, 2011

Getting so big!

Nick has been doing so well lately! He is eating more now for obvious reasons and has been gaining weight like a sumo wrestler! I am so in love with all his fat little rolls! His last weight was about 18 1/2 pounds....wow! When we left the hospital on March 11 he weighed about 14 1/2 pounds so he's gained 4 pounds! Holy cow, that might be a little much but I think he needed it and he's already starting to hold his head up more and just move around more. He still sleeps quite a bit but he does seem to be awake more often and for longer periods.
We are still scheduled to have a g-tube put in on April 21st. Nick won't be able to have another swallow study for a couple months and having the tube in his nose is not easy. It gets in the way, he gags on it all the time because it 'collects' mucus and such on the tube and it gets pulled out quite frequently. So we will have the g-tube put in and we will continue to work on his oral motor skills and hopefully he won't lose what he has learned so far and will be able to go back to oral feeding before too long.
Here's a picture of some of his rolls!
For some reasons I can't get the right picture to load....anyways here is a half body shot!