This fall we decided to go ahead and give Nathan a Nissen Fundoplication, a surgery which wraps the top of the stomach around the esophagus to prevent any food and stomach material from coming back up and further eroding the lining of the esophagus. It took us a long time to get to the point of taking surgical measures to improve his GERD. The downsides to the surgery are not being able to burp, vomit, and in some cases, eat. We are a couple of months out and I am glad we went ahead with the Nissen. Once he got through the initial recovery period, which involved retching and some feeding intolerance, he is doing much better. I can let him out of his chair to play after a meal. He is surprisingly still able to burp. And he has begun taking more volume of food by mouth! For a tube fed child this has been huge. Granted he’s not eating for volume, but he has less fear of pain with swallowing and eating. He certainly feels better.
To read the full article on Gaining a Better Understanding of GERD, visit PreemieBabies101.
BUT (with Nathan there’s always a but)…
He’s still experiencing tachycardia and passing out from time-to-time. After doing a thorough work-up on him and not being able to understand the cause of his symptoms, my gut says it’s a benign problem. Or at least a problem unique to Nathan’s body that we may not be able to prevent. It appears that the tachycardia is a symptom of some sort of pain in his body. Where? We do not know. We thought that the pain could be from reflux but after the Nissen surgery this theory doesn’t necessarily hold true. We am trusting that God will reveal to us what we need to know about his body, when we need to do it. In the meantime, we will continue to treat what we do understand.
A big piece of Nathan’s body that we did gain a more full understanding on in 2016 was his bladder/kidney complications, which were an obvious source of pain for him and which we have helped relieve a bit. Since January we have been cathing Nathan every three hours (mostly) so that he can void without pain and in attempt to prevent further kidney damage. We are traveling back to NY before the end of the year for a follow-up appointment with his urologist. We will check his kidney function and assure that we are on track for caring for this organ system. This time Mac is coming along and we are going to make it as fun as we possibly can.
We continue to look for the upsides to our upside-down life and be grateful.
give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” – 1 Thessalonians 5:18
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!