Tuesday, October 21, 2008

New feeding regimine...the saga continues

So we were excited to start Noah's new feeding routine in which we would start feeding through the stomach both continuous at night and 3 boluses during the day. The bolus feeds went really well. We will let Noah eat first and then when he is done we give him the bolus and he gets that "full" feeling. So far, we have not seen an increase in appetite, but it's still pretty new. The night feeds on the other hand are a whole different story. The first night we started it, we would hear his pump beeping every two hours with the error message "clog in line". For whatever reason the food was not going into his stomach fast enough. Finally the pressure would build up enough that the connection would blow loose and we would find Noah in his "waterbed" again. We have taped the connection, adjusted the tube, ran a million flushes, and everything else we can think of. When we bolus him during the day, I just attach a syringe to his tube and let the formula flow in by gravity. We noticed though that we would have to push it in with the plunger and it would never go in by itself. We called clinic yesterday hoping it was some mechanical issue that we would fix. We played with the balloon, deflating and inflating and still the same results. Then the J portion of the tube starting doing the same thing as the G on continuous feeds. Finally today the clinic nurses decided that the tube is either clogged, defective, or not in the right position and it would have to come out. We were pretty bummed at the thought because the g-j tube has to be replaced in the operating room under general anesthesia. However after discussing it with the surgeon they agreed that as long as he tolerates his feeds into the stomach with no retching or leaking we can put in the g-button! Yay!! So, we put on our Dr hats and removed the g-j tube here at home and replaced it with the g-button. Man o Man have I missed the ease of the button over the tube that we had to tape down to his stomach. So, here is hoping that this works and that we are back on track. If he stops tolerating the g-tube feeds or begins to leak, it's back to the OR we go.

We went to the pediatrician today for Noah's flu shot and got the unfortunate news that he was not approved for Synagis this year. These means no protection against RSV this winter. A simple cold for us can be RSV for him so we are going to try and be extra careful. Zane had his flu shot on Friday as well. We also go the script for outpatient physical therapy so I will start making calls this week and get him going on that.

Thanks for checking in on us and have a great week!

7 comments:

Rosie said...

Horray for the g-button! We are hoping that he gets to keep it :)

The Ellinger's

bikurgurl said...

Good luck - we're thinking about you:)

Love, Kelly and the Boys

Jeff Handley said...

I'll keep my fingers crossed about the button!

Anonymous said...

Hi Bakers,
For some reason, (probably operator error), I am now on board thanks to Leah. We are so with you and your journey. Keep your positive attitude and I know this is rough. We are with you.
Karen and Russ

Tricia said...

Here's hoping that the g-button continues to work!

I love your baby belly! :)

Fer said...

Hi. Just found your blog through Amy Miles' and I just wanted to tell you the I'll be joining you in your journey. My prayers are with Noah and the new baby.
Fer
Mexican Cherubs Rep.

Dawn T. said...

So glad to read all the positive news on your cherub! He's adorable! And what a cute blog template too.

I wanted to let you know that there is a new CDH blog ring for families affected by Congenital Diaphragmatic Hernia.

This is a service to all CDH families to help us keep up with CDH blogs and to support and encourage families that need it. You can view it on our blogger blog at http://cdhsupport.blogspot.com/

As you can see, it does not list CHERUBS or any CDH group and it is free to join. You can click on Previous and Next and surf from CDH blog to CDH blog.

You can add it to any blog - myspace, blogger, wordpress, live, etc. Make sure to add your CHERUBS site blog to this as well!

To join, go here: http://www.ringsworld.com/cdhblogsring/join.html

I hope you have a wonderful weekend!

Dawn
President & Founder, CHERUBS
mom of Shane (1/28/93-9/11/99), LCDH x6, vent 1.5 yrs, oxygen 2 yrs, trach 2 yrs, Mic-Key feeding button, deaf 6 yrs, sight impaired, ASD, pulmonary sequestration, hypospadius, recurrent pneumonia and blood infections, hospitalized off and on his entire life, lost to gastropleural fistula - loved matchbox cars, Sesame Street and books, walked, signed, was a happy little guy!