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G-Tube and Nissen Surgeries

We scheduled Amanda’s G-Tube and Nissen surgeries at Lucile Packard’s Children Hospital at Stanford for December 3rd 2010.  A G-tube is a gastric feeding tube inserted endoscopically into the stomach for long-term nutrition.  SMA type 1 babies lose their ability to swallow very quickly.  When Amanda had her surgery she was still able to eat by mouth but she was showing some indications that she was starting to have trouble, and her swallow study after surgery indicated she was aspirating.  It is very dangerous for SMA babies to keep eating by mouth if they are having difficulties swallowing since food can go into their lungs causing aspiration pneumonia.  A Nissen fundoplication is a surgery in which the stomach is tied around the esophagus to prevent reflux.  Reflux is dangerous in SMA babies as it could also lead to aspiration pneumonia.

 

It was extremely difficult to hand our almost 4 month old baby to doctors to have a surgery that would not even cure her.  I cried so much when they took her away from us.  The wait was painful, but after less than 2 hours we were able to see her in the PICU.  She was the most stable patient at the PICU; we saw horrible things there, and we were thankful our little princess did so well.  She stayed there for 2 nights and then we stayed for another few days at the apartment we had rented nearby.  While at the Hospital Juandi and I took turns to rest at the International Lounge with TV and goodies :) Being from Panama I had never experienced Hospital stays in the USA; there are lounges where family members literally live for weeks and even months.

As a ballerina on the day before her surgery

First time we saw her after surgery

At the hospital trying her BiPAP for the first time

International Lounge that we were lucky to have access to!

While at Stanford Amanda also had a sleep study and swallow study.  For her sleep study I had to stay at a Hospital at about an hour away from Palo Alto overnight with her.  Daddy dropped us and picked us up the next morning; we missed him that night.  I couldn’t sleep that night, it was painful to see her with so many cables all around her little body.  I had to breastfeed her, and it was almost impossible to hold her with all those cables on the way.

I really believed Amanda could still swallow, but I still wanted to do a swallow study just to be safe.  At the study they positioned her sitting up (even after I had told them she couldn’t eat like that, she would eat laying down), so of course at her second gulp she aspirated and the study had to be stopped due to the dangers of aspiration.  The Dr told us it was no longer safe to have her eat by mouth.  At the time I was still breastfeeding her and it was crushing to be told that I had to stop.  I thought we wouldn’t really need to use the G-tube.  So, I breastfed her a few more times because I just couldn’t accept that she could no longer swallow, but she did cough a few times, so I eventually stopped to keep her as healthy as possible.  That was a really sad and tough realization : (

Amanda during her sleep study

After almost 2 weeks at Stanford we travelled back home with Amanda to get ready for our first Christmas with her.

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