We had ventilator clinic yesterday, which entails a long drive to Dallas, a 3-4 hour clinic visit, and the long drive back. An extremely long day, but worth it yesterday, because...wait for it...we get to take Dakin's feeding tube out!!! After telling the nutritionist that save for the last little strike Dakin was on, he's been doing well with table food, she suggested that we give him a trial with it out. So today was our first day with it out, and he's done great--our main concern was that he can't burp and we have to burp him through the tube, but today he's had no gas issues. He's eaten quite a bit, but we need to up his calories a bit more to make up for the nighttime feed through the tube he'll be missing. We'll have to weigh him and call it in every week, but hopefully it'll be out for good! Wish us luck!
ALSO, we get to go to breathing treatments every eight hours instead of six! We're also coming off his tummy and diuretic meds, so all in all we're moving up. They even said that we could try a trach collar trial (Dakin completely off the ventilator for a little bit) next time we go to vent clinic! So all in all a great visit. Yay! Mommy needed a good one!
Sweet Dakin (it rhymes with bacon!) Boy
Here's our sweet little one. He is an inspiration and a joy to us every day. His courage is astonishing.
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5 comments:
Oh such good news! I'm really happy for you guys! I sure hope the oral feeds work and trials off the vent sounds so exciting!! Good job guys.
I am so glad that things are progressing as they are. I saw the video of him playing the piano and, oh, what a cutie!!!!! I soooooooooo need to come for a visit!!!
That is such wonderful news!!! We saw the video of him playing the piano, and, oh, what a cutie!!! Can I come visit???
That really is great! Whit wasn't home...so that's how I could do the 'do's'. Lol! It was pretty funny. No, Jonas has not had a haircut and I'm not quite sure we're ready too. I know what you mean about the straight up. Dakin would look cute with that.
Oh the diet...oh boy! I guess he's not technically on the "amino acid diet". It sounds like there is some battle of who is right when it comes to this amino acid diet. For now we are just switching formulas. I think that I will trust my doctor for now, she did go to medical school and is quite the specialist.
YAY DAKIN!!!!!!!! Keep up the great work!
MJ & Brenda
www.our-sma-angels.com/b4sma www.caringbridge.org/visit/mjpurk
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