Summer Nissan

[rainsplats]

Summer's been approved for a Nissan + g-tube. (she's 10.5 months old)

This is HUGE for us because she was sent home in January on palliative care. She's improved a ton at home and we're happy she's strong enough to have the surgeries. So, if you have to do palliative care...don't give up!

Anyway....wanted to ask what to expect with the Nissan. How long were you in the hospital after? How hard is it to get used to caring for the g-tube? Summer's on an NJ right now. It's awful cuz we have to take her to PCMC each time it needs to be reinserted. So, we have to keep a barricade between her and her twin.

We have a preliminary appointment with Dr Barnhart next week.

[Ellinger Family]

Nathan has had his g-tube/nissen since he was a month a half old. Now that he's had it for over a year, its just a normal part of our lives. The nissen isn't full proof, and if your child gets really sick she'll probably still throw up. We've been very fortunate about how great his g-tube site looks, but we're also very proactive of keeping the bandages fresh and clean. Nathan had to learn to roll over and to crawl with the button in his belly and he didn't really like it. Now he's a pro and it doesn't bother him anymore.

I can't tell you how long we were in the hospital because we were still in the NICU when he had it done. Life isn't all peachy with the g-tube, but its not as bad as I thought it was going to be either. One thing you need to find out from your insurance company is how many buttons they pay for a year. Nathan has a pretty acidic stomach and is going through a new button about once a month, although when he was smaller we had a couple last 2-3 months. Our insurance company will pay for a new button each month, but its still an 80/20 copay until we hit our max out of pocket. Medicare only pays for 4 a year. The Mickey 14 french 1.2 cm runs about $300-400 (what is billed by Praxair) for each button set. That is usually the one they put in kids up to about 35-40 pounds.

Good luck! The first time I had to replace the button when it came out I was a little freaked out, but its really not that bad now.

[Alli and Kyle Hicken]

Dr. Barnhart completed Grant's Nissen a month ago. We are probably not the best example to look at...he was one month old and had major complications from the surgery ending us back in the OR 4 times and we are finally getting ready to take him home. Some of this time for us has been with heart surgery complications and Grant's heterotaxy complicated things as well. We don't have a G tube...only an NJ. Hopefully everything will go GREAT for Summer...Grant's problems were complicated more by his anatomy than by the procedure. Dr. Barnhart is GREAT. We truly love him and he is very personable and has great follow up care. Good luck!

Alli Hicken
mom to Grant