The update for our Wednesday appointment is as follows. The surgeon we met with only does the Nissen Fundoplication (he also did Jonah's stoma and his take down, the take down left an awful scar......definitely not impressed with that. I can't help but wonder if it is because he is a younger surgeon, who knows....I do know the surgery was difficult and took 4 hours so maybe the outcome was just what it would be even with a different surgeon).
He has particular views about the Toupe Fundo, he feels it is just not affective at all and can require more procedural work down the road to keep it functioning. The Nissen is supposed to be more affective. I stressed to him that we would absolutely not agree to any of it if it affected Jonah's ability to eat. He said he has almost never taken a child in for surgery and then had to return to place a g-tube because it affected their eating. He did say that it was possible down the road as Jonah started eating more lumpier, thicker foods (steak, etc.) that they may need to scope the tube they place to widen it because sometimes patients get this "stuck feeling" when food goes down. Apparently the Nissen surgery he performs includes the placement of a tube so that the tightening cannot completely close off the stomach or end up tight enough that it affects the feeding. He went in to great depth about the surgery, including drawing diagrams and showing us exactly what would happen, some of the complications, etc. Overall it is just a scary, scray procedure. I won't lie. Especially since Jonah has already had three abdominal surgeries. *Sigh* He has a higher risk for complications. Usually they do the surgery by laborascopy but in Jonah's case more then likely they would have to do another, yes another, incision in his belly because of all his scar tissue, etc. Another scar! This poor baby has so many to start with!
I did like that this surgeon encouraged us to get a second opinion and said we should absolutely not pursue the surgery until we 100% knew it should be done. He stressed it was a serious procedure that could take Jonah up to a week to heal from. I did ask him how many of these surgeries he had performed, he said probably some were near 100. He has only been in practice for 6 years. I told him all the research we had read said the more experience a surgeon has with this surgery the better the outcome and he agreed that could be the case. He was confident in his ability but said that if it helped us make a decision we should meet with his partner and ask his opinion about the surgery.
Shane and I really wish we could talk with a surgeon that does both the Toupe and the Nissen. I don't know if the Madera hospital does the partial though. The partial does have it's controversy, mostly that it ends up in the long term not being as affective as the Nissen.
Next Tuesday we are getting an upper GI done for Jonah just to assure that he does not have any blockage in the upper intestine. Also, the surgeon wanted to repeat the milk scan for Noah to see if his empyting has improved any. We are in the process of trying to meet with Dr. Hodges for a second opinion. Apparently this surgeon does surgery at the hospital but opened his private practice separate from the clinic so it will be good to get a different perspective.
So all in all, we have a lot to talk and think about. Pray about too. =)
I think in our discussions we feel that Jonah has more of a potential long term issue going on then Noah (the surgeon talked about the Nissen for both boys). Even the surgeon mentioned that almost always the CP or neurologically impaired kids have long term reflux issues and GI has been telling us that for months.
We have a lot on our plates. Making a decision is going to take lots of thought. So pray for us that we will be guided. =)
We also met with Jonah's neurosurgeon again. I heard Tuesday from Dr. Kelly (Jonah's eye specialist) and she said she was concerned reviewing the radiologist report that Jonah's fourth ventricle showed some enlargement. She said that would be the area that would affect the vision and also the leaning to one side (which Jonah has a tendency to lean to his weaker side, the left). I was in all a panic thinking the neurosurgeon did not take the time to really study the MRI. Dr. Kelly said she would contact Dr. Magram for a more detailed explanation of what he saw going on and I called immediately after our phone call and spoke with the neurosurgery clinic. They invited us to stop by on Wednesday so Dr. Magram could speak to us in person. On Wednesday, he said that the enlargening was just a few millimeter's of change which can be due to the head positioning this MRI compared to last. He even pulled up the MRI and showed us the area of concern. He told us both that for now we did not need to be concerned and bumped up Jonah's follow-up from 6 months to 3 months just to be sure that nothing is really going on. He was satisfied that everything was just fine. We do meet with a neurologist and neurosurgeon next week at UCLA so we will see what they say.
It was a busy, busy day with a lot of information but it went well. We just have a lot of decision making now.
Wednesday night was interesting. Both boys had a vomiting fest. Jonah threw up, Noah threw up, Jonah gagged himself and threw up again because he wasn't getting attention and then Noah threw up all over me, projectile....in my mouth, everything. It was so disgusting and my Dad and I were just drained. I swear that night I was like, "Ok....I am DONE. I can't handle this anymore." It's nights like that which are just tough, tough and I want to throw in the towel and sign up now for surgery. I know that is not the right decision and we are going to make sure and exhaust every avenue before surgery but some times, it is tough.
We still need to do the food allergy test for the boys and then finish the upper GI to make sure nothing is obstructed for Jonah.
I wanted to include a Wikipedia description of the fundos that I have been discussing for those who do not know what type of surgery this is:
Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. In GERD it is usually performed when medical therapy has failed, but with paraesophageal hiatus hernia, it is the first-line procedure. The Nissen fundoplication is total (360º), but partial fundoplications known as Belsey fundoplication (270º), Dor fundoplication (anterior 180º) or Toupet fundoplication (posterior 180º) are also alternative procedures with somewhat different indications.