G-Tube Surgery Consult

The time has come. We are ready to surrender the NG Tube and move onto a permanent solution of tube feeding for Annabelle, a G-tube is in order. I had a couple options when approaching this procedure...

1. Our current GI could place the g-tube.
• Pro
• He's our current GI
• He knows Annabelle's history and is extremely interested in her case.
• He is having doubts about the accuracy of the Eosinophilic Esophaghitis diagnosis.
• He's performed procedures on her before and could best gauge the progress/continued damage to her GI system as compared to last scope.
• We are familiar with CHKD, the surgery process, recovery and patient floors.
•  
• Con
• I will be in Norfolk alone again
• The stay will be much longer than our stay when placing the NG Tube and I worry about how well I can manage Annabelle and her pain on my own for several days.
• I miss my little family so much when we're gone.
• The drive home after surgery scares me. Nearly 3hr in a car with a 5pt safety harness over your freshly operated tummy cannot be comfortable.

1. Find another surgeon to place the g-tube.
• Pro
• I can use a highly recommended, best Pediatric Surgeon of my choice
• We will be in Richmond, close to home, family and friends.
• Have another perspective from another Physician on Annabelle's condition
• Con 
• He isn't our GI that knows Annabelle
• He cannot perform an Endoscopy and collect any biopsy's during the procedure for testing.
• We will be in Richmond, that isn't always a great thing... 

I spoke with our GI and together we decided that I would use a surgeon in Richmond to do the surgery. Our consultation with Dr. Lanning was yesterday. Everything went well, but the surgery will be a lot more complex than we were all anticipating. Dr. Lanning is incredibly knowledgable and was extremely educated on Annabelle's case before we ever met him. He had reviewed the images, videos and notes from all her last procedures and Endoscopy's, he had a few concerns that we discussed.

Distorted Bowel

Because of Annabelle's history of lower GI complications, Dr. Lanning has suspicions of her bowels and their placement. We have never performed any tests or studies to confirm her bowels location, therefore, it would be reckless to attempt placing a tube between her stomach and the outside without confirming there is no chance of damaging bowels that could be between the two areas in the body.

Dr. Lanning will perform a procedure to scope the bowels and also insert a camera into the abdominal cavity, outside of the stomach, to ensure there is no chance of placing the tube in an area that could interfere with another organ. During this procedure, if Dr. Lanning determines this is an issue, he will stop the surgery and join AK and I in waiting to discuss other options based on his findings.

Nissen Fundoplication

Annabelle has been diagnosed with GERD, Gastrointestinal Reflux Disease. I ignorantly assumed this was just like regular 'reflux' and would eventually resolve on it's own. I think all our doctors were wishfully thinking the same. Annabelle takes a compounded PPI twice x day to keep the reflux under control without pain. She often coughs and aspirates during the night, if/when she is not on the medication, she is absolutely miserable, she is in screaming pain and without any relief until the PPI is adminstered and has time to begin working effectively again.
Bad mommy days.. I stayed busy last week and kept forgetting to pickup Annabelle's prescription, the two times I tried picking it up, one insurance or another denied it's coverage, and I just didn't have $377 to pay for the prescription. Friday evening, I recognized we were out and Annabelle was quickly getting uncomfortable. The office was closed all weekend and she was in so much pain. She rarely slept more than 30min at a time, she would wake herself coughing, choking, vomiting and screaming in pain. I had pretty bad heartburn when I was pregnant, I cannot imagine how miserable she is with this amount of reflux. Many times, she coughs up and spits the reflux that is traveling from her stomach, burning every inch of the way. 
We began the prescription first thing Monday morning and by Tuesday morning she was back to her roaring, crazy self and sleeping without any issues. This is the second time I have attempted coming off this medication. One time I trialed only giving the medicine before bed and not in the mornings and that was an equal failure.

Dr. Lanning explained to me yesterday, something that I had never understood or even knew was happening. He explained that sometimes infants do have reflux and that is because the muscle that keeps the fluid/contents in the tummy hasn't fully developed and it just takes a while before it does. This is what it's called when people say "They grew out of it", when really, they just grew the muscle that is supposed to be there in the first place. By Annabelle's age, this should have already happened. She should NOT be dependent on a reflux medication as often as she is. The message this tells the physicians is that the muscle has not developed and will not after this point. Dr. Lanning reviewed Annabelle's records thoroughly and added the additional explanation for why she is having such a hard time with this area of the esophagus/stomach. It's likely that the muscle and area of the esophagus was ruined from the long periods of gastritis and Eosinophils that were rapidly destroying her GI system before we got a diagnosis of Eosinophilic Esophaghitis in March. It wasn't until March that we treated the gastritis and cleared the Eosinophils from continuing to damage her GI system. From the moment she was born to 18mo old (when this muscle should have been fully developed), Annabelle's little body was being destroyed. It's reasonable to assume this is what has prevented the development of this area from maturing and correcting itself. This is also a very, very common condition with people who suffer from EoE.

This brings us to the next decision we needed to make. Do we perform the Nissen Fundoplication during the time of the G-Tube placement or not? In Dr. Lanning's opinion, it needs to be done. There is no justification for waiting, especially with the amount of damage that is already reported at the lower end of Annabelle's esophagus. It's likely that this will never fix itself and performing the surgery while she is already sedated is truly in the best interest of Annabelle. There are not any cons to performing the procedure, except, I need to say "Yes, do more surgery." I hate subjecting Annabelle to anymore than necessary :(



The G-Tube part of the conversation with Dr. Lanning was wonderful. I was already educated on what to expect so I only had a few questions for him.

• Will you place a Peg Tube, or G-Tube / Button right away? He will immediately place a MIC-KEY Button during the surgery. Because Annabelle is already on a tube and being nourished at the rate we would expect, we can assume she will not rapidly begin putting on weight, a button should be safe to place and last until the first change.
• How long will it be until we replace the button? 6 weeks from the time of the surgery. The tube will be replaced in the office the first time and after that, I will replace the tubes at home every 3-6 months.

Dr. Lanning performs the surgery laproscopically.  He will make an incision thru her belly button to visually look around in her abdominal cavity and also guide the tube for the very best placement on the stomach to ensure it will last. He will also have a scope down her throat/esophagus to view the procedure being placed from the inside. Several other tiny incisions will be made around her sides for the probes to perform the procedure as laproscopic. This is the most minimally invasive method used today for placing G-Tubes and I am grateful we will have Dr. Lanning performing the surgery. He is highly recognized, respected and he has performed more of these procedures than I can begin to count. I look forward to this next step in Annabelle's little journey - I am not looking forward to surgery or any of the pain associated, but I am looking forward to seeing my beautiful little girls face again without tape. I am looking forward to not dealing with clogged NG-Tubes, them falling out, leaking all over my house, replacing them, taping them, measuring them etc. I look forward to being able to venture into the public with a normal looking 2yo :) This will be a good thing... I hope this is a good thing. It will.. it has to be.

So we have a lot to think about. I will speak with scheduling tomorrow to schedule surgery and at that time I will have decided how many/which procedures will be taking place.