G-Tube & Nissen Fundoplication – Preliminary Thoughts
I had a good phone chat with Dr. Kodali, the pediatric gastroenterologist. It was a good discussion on moving forward with the G-Tube, perhaps in a few weeks.
There’s also a procedure called Nissen fundoplication (Nissen) we need to learn more about. It’s essentially going in and wrapping some of the stomach tissue around the base of the esophagus to prevent reflux. Reflux is common in SMA babies and can lead to potential reflux aspiration and related pneumonia.
Although Getty doesn’t have a reflux problem now, it’s bound to happen someday, as SMA is a degenerative condition.
There is a split of opinion between gastro and one of the Kaiser surgeons on whether to do the Nissen. Gastro is recommending G-Tube and Nissen, but the surgeon is reluctant to recommend Nissen in SMA babies, asking, “Why would you want to put a [SMA] child through that?” The surgeon’s thought is that a weak SMA baby shouldn’t be asked to endure the Nissen procedure.
Based upon a very quick read, it appears Nissen is recommended and the answer to the surgeon may be because I’d rather not risk putting a child through pneumonia caused by choking on reflux. I have more reading to do and consulting with our beloved SMA community. My hunch is they will tell me to find a different surgeon.
It’s like taking a crash course in medicine on top of everything else. Soldier on!
Good for you for looking out for your sweetheart! We are SOOOO grateful we had the nissen done on Stella . . . make sure they atttempt to do it laproscopically as the healing time is very quick. Don’t do it with a robot though . . . our hospital attempted that. I’m wondering if you need a new surgeon anyway–maybe he’s not confident in his abilities. I would interview the surgeons when you meet with them and ask how many successful nissens they have done and what is their confidence level with doing Getty’s. As an SMA family, we learn to ? everything! HAA!
We actually had a similar experience to you but it was the surgeon who said that he thought she should have it but the neurologist had the nerve to say, “Why would you do a gtube/nissen in the remaining time you have with her?” Stella was 4 months at the time . . . and guess what? She’s going to be 3 1/2 year next week!!!!! Remaining time??? The neuro is FLOORED that Stella is alive, happy, and doing pretty well.
It’s up to you guys but just wanted to share my experience. We have a friend here that wishes they had done it because they have had some issues of vomitting when ill and then you have to worry about it in the lungs, pneumonia and etc. During illness for us, we just keep her tummy vented by opening the gtube and connecting to a syringe to make sure there isn’t enough pressure in the tummy to go up through the nissen.
Hugs from Iowa,
PS If you ever need anything, let us know!
You have probably already found this, but just in case there was an article published in the Journal of Child Neurology on this very topic — Nissen in SMA children. It was written by Drs. Nanci Yuan, Ching H. Wang, Anthony Trela and Craig T. Albanese. Definitely print it out and give it to your surgeon. It is a pretty straight forward surgery, but there are some areas of concern for SMA children. Extubation post surgery and holding feeds pre-op. And definitely it must be done laproscopically.
Dr. Albanese did Gwendolyn’s surgery and Dr. Yuan oversaw her extubation. They are both wonderful. Perhaps your doctors could call them.
We have the article on our website. It has the very long name of: Laparoscopic Nissen Fundoplication During Gastrostomy Tube Placement and Noninvasive Ventilation May Improve Survival in Type I and Severe Type II Spinal Muscular Atrophy. http://gwendolynstrongfoundation.org/newly_diagnosed
If you need anything, don’t hesitate to reach out!
Great info for them, Victoria! Yes, extubation protocols need to be followed and they should make sure Getty doesn’t have to fast for too long. If they don’t plan to restart feeds soon after surgery, she should be put on TPN/PPN/CVN. If you need the diet and extubation protocols for SMA kids when they have surgery, let me know and I’m happy to email it to you. We were NOT armed with the right information to give doctors when we went in and we wish we had it. We now have lots of documentation to have on hand in case we get ?ed on our rationale.
Sarah and Stella
Grandma and grandpa Stump (parents of Mark) in Temecula join the Getty Owlet team in wishing miss blue eyes a happy, fun filled day on her 6 months birthday. What a marvel you are! Love the picture of you in your tutu, owlet hat, and hugging the owls Rachel and Sarah gave you. You and your mom’s green canvass tie up shoes are a hoot. Also love the separate photos of you with tender moments with Daddy & Kate.
Perhaps you will get extra splashing time in the bath today with your balloons floating above you, and extra time in the park your buddy the whippet Cooper. Much love precious owlet to your mommy and daddy, and to your grandpa and grandma in Sacramento and to all of the Getty Owlet team. God bless.
I was communicating with our gastro about fasting and TPN. I don’t know what TPN is yet, but I hear it’s recommended. Anyway, her response is as follows:
“We can discuss these issues once we schedule/finalize the procedure. I already discussed with the Genetic specialist who does not see any reason why Getty can be on IVF for upto 12 hrs especially with good muscle mass and no failure to thrive at this point.”
If you feel comfortable with that and they agree to feeding her after that time, then it’s your call . . . I just know that in our experience, they said they would feed her and next thing I know we are waiting for a few days to feed her something other than sugar water. If you can avoid TPN by feeding her soon after surgery then great . . . just make sure they promise to order TPN for you if they think she might have to fast for very long. TPN usually takes 12-24 hours to mix in a hospital unless your hospital does it on demand (many don’t).
I just always find we have to get all ducks in a row before we do anything with our hospital because they will try to skip the TPN or they have tried to extubate her without the bipap right there . . . they must go on bipap to transition back. I just want to make sure noone else has to go through the issues that many of us have had to go through. If you need any documents, let us know. HUGS!
Grammy and papa (kate’s parnents) Happy 6 months to our little owl….We love you all so much. Thanks to everyone on Getty’s team it means so much to all of us.
Grammy and Papa
Happy 6-months to Getty from Mike Michelle, Isabel and Claire!
If you can, I would try to go see Dr. Nanci Yuan before surgery (Pulmonologist at Stanford). Get her in the loop. She will be happy to work with your doctors post surgery. She probably won’t intervene on the feeding, but she will help you with extubation. And in general, SMA children are extubated to bipap – so you should have your bipap ready before surgery. Dr. Swoboda at Utah wrote a paper on feeds for SMA infants before surgery — “Peri-operative Nutritional Care Guidelines for children with SMA.” Here is the link — http://medicine.utah.edu/neurology/research/swoboda/sma/treatment/special.htm