I finally found a good discussion on the Nissen fundoplication surgery - for children. Most of what I had read was relating to the surgery in adults.
So, we're dealing with several issues. The G-tube surgery has a relatively easy recovery as compared to the Nissen. The hospital stay would be much shorter. Less time in the hospital cuts our chances of getting an infection (staph, RSV, etc.). It also would be less time under anesthesia.
It would be ideal to do either or both surgeries while Oliver is still pretty healthy. Once his health declines or his breathing becomes more difficult, the whole anesthesia intubation/extubation monster rears its ugly head.
If we don't do the Nissen now, we pray that he doesn't have problems with reflux. Unfortunately, reflux is one of the major side effects of feeding via G-tube. Even if there have been no indications of reflux prior to the surgey. (Oliver's gastric emptying study only revealed one minor incidence of reflux just after starting the study. He has only spit-up 3 or 4 times - total - in his 6 months of life.)
If there is reflux, we could risk doing the Nissen surgery later or the tube into the stomach could be lengthened so that it empties into his intestines. Lengthening the tube means that his stomach would be bypassed and he would always feel hungry. Plus, if the tube goes into the intestines, you have to do continuous feeds. Bolus feeds are not an option. (Bolus feeds are feeds that are done 4 to 8 times a day for 15 to 30 minutes each time. This is more like a normal bottle-feeding schedule.)
As you can see, this is a complicated decision-making process.
We are leaning towards doing both the G-tube and the Nissen fundoplication. And doing it fairly soon. I would like to get all of his doctors together before the surgery to make sure that we are all in agreement on how to best handle Oliver's care. (I don't want to have to argue the pros or cons once we're in the hospital and have had the surgery.) I hope to do a little bit of educating with some of the info that I've found relating to these procedures in children with SMA. I'd love to get some of the standard of care guide information into his chart so that every doctor or nurse can easily reference it.
There is one other "fun" aspect of this process. One that we haven't really touched upon yet - the insurance company. I'm not looking forward to that battle.
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Thanks for these very informative posts! The links you've provided are really helpful, and it comes through quite clearly just how difficult and thorny these decisions are and why. I wish the path could be easier, but I have such deep respect for the way you are navigating it. 2 weeks in the hospital does seem like an awfully long stay, but you know that if the nurses there get 2 weeks of Ollie's big blue eyes and smiles, they may not let you take him back home. :) I'm thinking of you as you face these decisions, and so proud of you for how you are doing it! Much love, Erin
ReplyDeleteI am a friend of Amber Pittman Barnes and she shared your blog with me. I just wanted to let you know that first and foremost, we are praying for your son. He is such a cute little boy. I also wanted to let you know that my son has a g-tube. Like you we were faced with the decision of a g-tube and Nissen or just the g-tube. I know that every situation is different and you are definitely dealing with health concerns that we didn't have with Hinton, but I am more than happy to answer any questions that I can. I'm no expert, but Hinton has had his g-tube for almost a year and a half. Feel free to email me at melkmcgee@hotmail.com if you would like to chat.
ReplyDeleteMelissa Meyer
::hugs::
ReplyDeleteI just read your post. i am so sorry that you have to decide this, but based on what you have shared and how I feel as a mom I would probably go ahead and do both while he is healthy so not to take any major anesthesia risks later. 2 weeks in the hospital does not sound like fun but it will fly by and then your happy little boy will be home.
Love,
Allyn