The vacation was truly a blessing. Before the GJ tube Lucy could have never in a million years made that trip. She was too wiped out, dehydrated, exhausted, and unhappy to enjoy a trip like this. But instead, she ran and ran, we didn't use the once previously dependent-on stroller to navigate any of the attractions and Lucy was just as happy as could be the entire time. This is a tremendous turn around for our little girl, just tremendous. We are living again!
Yesterday morning we had our regular appointment with our GI, Dr. G. We had lots to discuss since we haven't been in since the GJ placement.
Lucy weighed in at 30.5 lbs! That's a 2lb gain roughly and put Lu into the 42nd percentile. This no longer puts Lu as Failure to Thrive!! Her height remains bad and sometime next year we will need to see endocrinology to assess whether or not its a growth issue or just genetics. I am thinking its genetics, but because the lack of vertical growth is a change from her history, Dr. G feels the opposite. We will see.
We also discussed Lucy's totally absent stomach emptying. We've usually been stuck constantly draining her stomach to keep her from throwing up or dealing with reflux and bloating. We also have to flush her stomach frequently to thin out the mucous in her stomach so that the g- port to her stomach doesn't become clogged. The whole process can take up most of our day but its the only way to keep her severe reflux under control and to keep her tube from becoming clogged. Dr. G felt that a good option for Lucy would be to keep her on a farrell bag all day long. This is basically a bag hooked up to her stomach all day that she will drain into. It means having her lug around yet another bag, but the trade off is the freedom of not having to worry about excessive bloating, painful reflux, or time consuming flushing and draining at all hours of the day. Hopefully this works for her.
Dr. G was thrilled with Lucy's progress physically and emotionally since getting the GJ tube. Even he could see on his own how much more energy she has and how much happier she is since the placement. He wants to make the j-feedings a more permanent situation. A GJ tube really isn't meant for long term use. It can be long term, however the button has to be replaced every 4-6 months (and that's if its problem free, if not, then even more) and replacing it means sedation and a minor procedure several times a year. When a child is expected to stay on J-feedings pretty long term, its a safer, easier, and less costly idea to surgically place a tube into the small intestine.
The procedure he wants to do is called a Roux-en-Y and it basically will permanently alter the anatomy of her intestines. The procedure will create an arm on her intestine and pull it up to the surface so that a new button can be placed at the skin for direct access to the small intestine. She'd have two separate tubes on her abdomen- one for venting and draining the stomach, and one for feeding into the small intestine. Tube changes would still need to occur but they could be done at home by me in 5 minutes. This basically just makes life easier on Lucy in the long run, however, its a major surgery with some significant hospital time. The idea of this surgery has been on my mind since we left Dr. G's office. Its a huge huge decision, and not one without risk.
In the meantime, Lu is going to be scheduled for her first tube change in December. The button is set to fail anytime from December to February and since we've reached our out of pocket max for the year with our insurance, we won't have to pay for this change. What a relief! It will run us something like 1200$ out of pocket every time she needs a new tube and its nice to know we will be set for the first few months of the new year.
I think that about covers it all. I'm still wrapping my head around it all myself. So many major decisions to make in the year ahead, so many developments in the year behind us. This roller coaster has been insane! I am so thankful for the good changes, and am already so deeply worried about the future in front of us. I hope I can make the right choices and keep my baby girl happy and healthy.
Thank you for checking in on Lu!
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