Too many Chiefs and not enough Indians!
We had a check-up at the Clinic today and saw Dr. Benjamin. According to her, Dr. Malcolm, Dr. Goldstein and Dr. Ashley all have very different opinions about what to do with Carter. In the past 2 weeks, he has begun to vomit with every feed, except the 9pm, 12am, and 3am feeds. In the past few days, his reflux has come back with a vengeance. He gags A LOT and it's so pitiful to see him suffer. He's also started waking up around 5am, sounding like he's choking/gagging. Dr. Malcolm seems to think that he's silently refluxing during the night and it peaks in his esophagus around 5am, causing him to choke on it. Dr. Goldstein thinks we should have the G-tube put in, and she thought we should have seen surgery today about it. Dr. Malcolm was in-service in the TCN, but came all the way to the Clinic to talk to us because he feels so strongly against the G-tube. Additionally, the OT he sees at Duke has her own opinions and the OT he sees in outpatient has hers. We have so many opinions our heads are spinning right now! Additionally, it's uncomfortable to be in the middle of their battle over Carter. If things don't improve, we may seek a 2nd opinion from another hospital.
Dr. Malcolm recommended that we try Baclofen (it's not federally approved for reflux) because in SOME children it's been shown to greatly reduce reflux. We'll try just about anything right now to get Carter some relief. He said if it's going to work, we should see some improvement quickly. We have made it almost 4 weeks without the NG tube and on Monday, we'll be placing it back in. Carter's oral feeding skills have completely tanked because of his reflux issues. Leah thinks that we should continue PO feeds at night because they go well, but during the day we should only tube feed and work on making eating a positive experience. She thinks he'll do well eating from a spoon, but we have to get to that point first. Dr. Benjamin also wants us to go back to tube feeds (although she wants a G tube) because of the effect it's having on us. She knows that we are reaching a point where we dread to feed Carter, which is not fair. Feeding your child should be an enjoyable experience. We were in tears today when talking to her because it's just so hard and we want to make it all better for Carter. To see him happy and comfortable when he eats is a dream that I wish would come true.
His weight today was 5935 grams (just over 13 pounds); head circumference was 41 cm; length was 25 inches. He's in the 5th% for growth, BUT he only gained 25 grams in the last week. He should be gaining 25-30 grams per day.
Another change Dr. Malcolm wants to make is to increase the volumes Carter intakes per day. He's currently averaging 750mL per day; they want him to intake 950mL per day to grow. We are currently mixing the Prosobee forumla at 24 kcal/ounce. I'm worried he's not going to be able to handle that much increase in volume, but we have to do something to grow and not just "maintain."
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