It's time for another technical detail and number heavy post. It's the only way to help you see the whole picture and understand what we're facing. There's a lot to digest here (no pun intended), but it's a necessary evil. First, some terminology.
NG: Nasogastric tube. Feeding tube into stomach.
NJ: Nasojejunal tube. Feeding tube past stomach, into small intestine.
G-tube: Gastric tube. External feeding tube through abdomen into stomach.
Fundoplication. Surgical alteration to remedy reflux.
Reflux. Acid reflux. Stomach fluids in the esophagus.
Bolus Feed. Feeding that is not via constant drip.
Eli needs 60ml of milk every three hours. Previously, he had been matured into this level of consumption. At one time, he actually took an entire 60ml from the bottle. Typically, he would only take about half, and the rest would be put into his NG, so all 60ml made it into his stomach. This is called a bolus feed. Then he got sick, and his NG was lowered into an NJ, bypassing the stomach and eliminating the chance of reflux. When fed via NJ, he goes from 60ml every 3 hours to 20ml/hr in a slow drip, a constant feed.
As he began working past his cold, they brought his feed tube back to an NG, and returned to bolus feeds, but at a lower rate, since his stomach hadn't had anything in it for 2 weeks. They started with 30ml bolus, and he did OK. They told us they'd do a gradual increase up to the 60ml full feed. When we returned the next day, he was back to an NJ and constant feed. They told us they increased his bolus feeds by 5ml every feed, until he was back at 60ml. That means they "gradually" increased his feeds from half to full over 18 hours. He had reflux issues, and couldn't handle the full feeds any more. Hence, the return to the NJ.
It struck Tanya and I as odd that they'd ramp him up so quickly. He's never done anything quickly his entire life, as you all well know. We start doing research and found that the number one cause for reflux is overfeeding. It seemed to us (now, we're obviously not doctors) that they needed that increase to be much more gradual. On the scale of weeks, not hours. The problem is that Eli would starve if only fed half feeds for a week.
To stop the reflux, they want to do a fundoplication, which is a permanent "tightening" of the sphincter at the top of the stomach, so he won't be able to reflux. This strikes both Tanya and I as a rather permanent solution to a temporary problem. The fundoplication is permanent, and has life-long side effects. Primarily, Eli would never be able to burp or vomit for the rest of his life. All babies have reflux, to some level, and they grow out of it. Typically, this happens between the first and second year, but almost every baby matures past it.
As we've grown accustomed, Eli's cardiac condition influences the immediacy for their concern. The primary concern with reflux is aspiration of the reflux... getting the fluid into his lungs. Eli's lungs are currently the most closely watch organ in his body. His heart defects and all his surgeries are based around oxygenation of the blood. Obviously that means the heart, but also the lungs. He is extremely sensitive to any lung damage, inflammation, or irritation. A common cold inflames the lungs, making them less effective, lowering his oxygenation. This is why a common cold sends him to the ICU. Also, aspirated reflux causes damage to the lungs, hindering their ability to oxygenate the blood. Our cardiac surgeon has made us aware, a severe reflux episode could be extremely detrimental to Eli. He's even seen cardiac kids die from reflux aspiration.
We have verified three options with Eli's pediatric surgeon (whose own child had a fundoplication 16 years ago).
- Go through with the fundoplication. Remove risk of reflux. His recovery requires he stay at CHCC until second cardiac surgery in June/July.
- Continue to feed him NJ indefinitely. Remove risk of reflux. This feeding routine requires he stay at CHCC until second cardiac surgery in June/July.
- Change his feeding routine to a mix of NG and NJ. Feed 30ml into the NG, and 30 into the NJ. As his stomach is more ready, change that mix. Continue this until, eventually, his stomach works back to full feeds. Timeline unknown.
And the final piece of influence.... There must be a 4 week wait between the fundoplication and the second cardiac surgery to allow for healing. With the doctors guessing this surgery to be in June/July, that doesn't give us a very big window to make sure we get the fundoplication taken care of. A decision needs to be made soon. They want to do it this week, if his lungs have cleared out the cold he had, and are ready for general anaesthesia.
So here's the big picture in review, simplified down. Eli isn't handling full feeds, he refluxes. They want to solve this with a fundoplication. They are taking the conservative "cover all your bases" approach. We like the idea of graduating him up to full feeds over time with a combination NG/NJ tube, but don't want to risk his health.
To be totally fair, every doctor we've spoken to supports the fundoplication. But this is their job, not their lives.
Please pray with us, as we're begging God for the wisdom to make the right choice for Eli. We're on our knees as much as ever with this decision.