A few questions

[MatthewsMom]

Dear group,
I just wondered if any of the children in the group have had the Nissen surgery. What is life like after the Nissen? Has it worked? We are possibly (likely, in my opinion) having this surgery, as well as G-tube surgery, at the end of the month.

Also, recently we have had some occasions to go to our pediatrician's after-hours clinic. Each time we have gone, they have looked beyond the issue at hand and sent or tried to send us to the ER for other reasons besides the one that brought us there. All of the other doctors in the clinic are unfamiliar with Matthew's case, which is why they send us to PCMC ER. This has been somewhat of a source of frustration for us, as we do not think we have any reason to go to the ER but we do not want to ignore competent medical advice at the expense of our child's health (of course!). Our pediatrician wrote a note in Matthew's chart that the other providers could call him before sending us to the ER, but the last two times he could not be reached. Has anyone else dealt with this? What kind of solutions to this issue have you found to be effective?

Thanks!
Ashley

[rainsplats]

My daughter was supposed to have the nissen, but they decided she wasn't well enough for it. They'll look at her for it again next month.

Concerning the ER thing....We have a home nurse who has been coming once a week. She's coming less now because my daughter is doing better. But we can still call her 24/7 if we have any problems or questions.

Recently we've called her any time Summer's NJ tube gets pulled out. She calls PCMC and arranges for them to find a radiologist/set an appointment for it. We also call her when we have questions about meds. She's through CNS.

You could talk to your pediatrician about setting up an order for a home nurse. He could tell you if it's feasible in your situation.

[Ellinger Family]

My little boy, Nathan, has a g-tube and nissen. I was mortified initially last year when the doctors said that Nathan's only ticket out of the NICU was getting that surgery done. I mean, isn't throwing up a "normal" function of the body? Also, I was terrified of the thought of what would happen if the g-tube came out. Would I be ok with putting it back in or would I freak out?

Nathan has had his g-tube and nissen for over a year now. There are days when I wish that it wasn't a part of our life, but getting that for Nathan was one of the best decisions that was made for him. Nathan, like almost all of our heart kids, had serious reflux problems. The nissen takes care of the daily reflux issue. My four year old gave Nathan the stomach flu and he's gotten pneumonia a couple of times this winter. When he gets really sick, he throws up large volumes of food. Don't be alarmed because the doctors say the nissen is full proof when its really not. Its very sad to see a child dry heaving though and that does happen sometimes.

As far as the g-tube... you will notice if he is pump fed that large volumes of air will get in his tummy and hurt because he won't be able to burp. We have learned to follow Nathan's lead and vent his stomach before it becomes a huge problem. You will always need to carry an emergency kit with you in a diaper bag in case the button comes out. The first time I had to replace the button when the balloon popped I freaked out, but we made it through it and every other time has been a piece of cake. We have been very proactive with cleaning the g-tube site and have experienced very little granulation tissue. The home health care company should send you with a backpack that carries the pump and the bag that holds the food. You will find that it makes it much easier to take your son to the doctors or to the park in the summer without having to worry about the feeding problems.

My little boy has somewhat of an oral aversion. He's old enough and smart enough to know what food is. We have worked very hard this last year on getting him to eat and it has been a slow process. I believe though that the g-tube and nissen have helped in his eating because there is not a tube in the back of his throat that makes swallowing wierd for him.

We still have a hard time finding a babysiiter for Nathan. Even my husband's family, with whom we are close to, are intimidated by the g-tube. We have spent countless hours teaching others how to care for him and also that its really not a big deal. We do a babysitting swap with some of our neighbors and we have 3 out of the 4 couples that participate with us finally (after 7 months of swapping kids) willing to take Nathan.

We have lots of silly stories about that g-tube on our blog. You are welcome to roam though it and see what we have dealt with.

We wish you the best and hope that everything goes ok for Matthew!

-Stephanie (Nathan's Mom, TOF)

[Ellinger Family]

Sorry...

the blog is:

www.jakestephanieellinger.blogspot.com

[Alli and Kyle Hicken]

Our baby boy, Grant, is 17 days old today and he just had the Norwood procedure for his Heart and we are set to have the LADDs procedure for his intestines and the Nissen procedure for his stomach on Wednesday. We spoke with his surgeon this morning and we are opting right now to try and avoid the G tube if possible (Grant has never been given the chance to eat, so we are still hoping for a miracle). After Wednesday, I will be able to give you a picture of what life is like immediately after the surgery, but it might be different since Grant is still a newborn!

Alli Hicken
grantmeaheart.blogspot.com