Brady's feeding really hasn't improved over the past few days. He continues to eat about 40 percent of his required volume through a bottle. He has large feedings and then seems to sleep through next one. It's hard to tell if his feeding issues are due to brain injury, throat trauma, or lack of physical strength. His aspiration and reflux problems make it even more difficult to determine a cause or a solution for his feeding issues.
They had initially set this Sunday as the point to reevaluate his progress with eating. If he isn't showing improvement by then, there's a good chance that he has reached a plateau and could stay at that level for several more weeks.
Our nurses had mentioned having a meeting with the neonatologist, OT, pediatric surgeon, and nurses about the next steps with Brady's treatment later this week. Instead of scheduling that meeting, they all stopped by Brady's bedside throughout the day today.
We actually had three surgeons who visited us at different points. The first was a resident student, then the actual surgeon who would complete the procedure and then another resident. Since the U of M is a teaching clinic, we've met residents almost every day at the hospital.
The doctors all explained that there are three treatments for babies like Brady. The first is called Nissen fundoplication. It involves wrapping the upper portion of the stomach around the lower portion of the esophagus to cure the reflux issue. We've learned this is usually a last resort surgery, and they would prefer not to do this with Brady right now.
The second option is the G-tube which we explained a few days ago. They would insert a button valve outside his stomach that would allow us to feed him directly into his stomach instead of through the tube in his nose.
The third option is a gastrostomy-jejunostomy (G-J) tube. This is very similar to the G-tube except there is a second internal tube that goes into the small intestine. The button on the exterior of the stomach would allow us to feed him directly into the stomach (large amounts) or into the small intestine (smaller amounts) in any combinations. The advantage of the G-J tube is that feeding directly into the small intestine eliminates the reflux issues that occur in the stomach.
The doctors all told us that the G-J tube is the best option for Brady. Our nurse brought us to look at another baby in the NICU who currently has a G-J tube. She explained how it works, and it was nice to see exactly what it would look like.
We also met with the neonatologist today. He said that it's difficult to predict how long it will take Brady to eat on his own. If he has reached a plateau, it could be weeks or months.
His recommendation was the G-J tube if Brady isn't showing more progress by Sunday. Our OT and nurse today also said the G-J tube makes the most sense.
We scheduled the G-J tube surgery for early next week. We'll wait to see Brady's progress through Sunday before we confirm the surgery.
The biggest advantage of a G-J tube is that we would be able to bring Brady home. The neonatologist told us that babies will recover more quickly at home. Babies can't go home with the feeding tube in their nose because they are too difficult to manage. The G-J tube would allow us to feed Brady by bottle and then supplement the rest of the feedings through the tube. We could send large amounts into his stomach or trickle smaller amounts overnight into his small intestine. It also would allow us to feed him any medication directly into his stomach (Brady will be on a seizure medication when he comes home).
We have some concerns about bringing Brady home with this tube in his stomach and doing everything on our own. Brady will stay in the hospital for about a week after the G-J tube surgery. Ali and I will be able to work with nurses and learn how to use the tube and care for Brady during that time. We also might stay overnight at the hospital before bringing him home to make sure we feel comfortable with everything.
We continue to trust the doctors and nurses and the suggestions they make for Brady's care. Please continue to keep Brady in your thoughts and prayers as we move through this final hurdle to bring Brady home.
With love,
Tyler, Ali, Ava, Casey and Brady
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