We are going from 6 days of attempting to get at least 24 ounces into his with a medicine syringe. Yes - he is still drinking from a bottle, this is the only way he gets his nutrition, which will be why there will be a post later titled :
Feeding Tubes - The decision
Because of his dysphagia which he has as part of the many diagnosis stemming from the brain malformation, swallowing/eating isn't a strong point of Daniel's.
So when he gets sick (more frequently lately) he stops eating, and we resort to this.
Can you guess how many times you need to refill this bad boy?!?Because Daniel isn't able to tell us WHY he isn't eating...ear hurting, tummy ache, whatever...its a guessing game. This time I think it was a combo of the above plus the antibiotic he was on. Cleared up the ear infection real well, but left him to fight off the sinus drainage and the tummy aches. Well, at least that is my uneducated guess.
Today is our second day off the antibiotic, and we are seeing some good changes.
Appetite increasing, increasing peeing (TMI I'm sure but its important!), and more activity and smiles! Very excited to report that in one sitting of attempting to eat food he ATE 1 whole avocado and 1/2 cup of pureed mac & cheese!!
Estimated total calorie intake for today: 1575
Pretty good from the days before of pedialyte!
Here's hoping for an even better day tomorrow!!
4 comments:
So glad to hear that Daniel's appetite is returning! I cannot imagine how stressful that is for you when he is not eating. Hope there are better, healthier days ahead!
So glad he is on the mend! Fletch and I have been sick since Christmas Eve, but he is recovering faster than I am!
I look forward to your feeding tube post. It is such a tough decision, but frankly I don't know how you have mangaged to keep him at such a good weight using bottles alone. No matter what you decide, Mel, it will be what is best for Daniel... you know him so well.
glad to hear B-bro is finally eating again! :) xoxo
sister- c
Glad he's improving and having an appetite. I'm trying Vitamin D drops with Q to see if I can keep back from that same conversation. So far this fall/winter we've had nothing serious. One mild-ish cold, one night of puking, but nothing else. The big test is coming up -- seems like the nebulizer comes out between Jan and March sometime.
The hard thing is that if Q is going to eat a substantial amt, quite a bit of his meal must be done either with SLP stroking his throat to keep him in a swallowing pattern, or reclined significantly so gravity can help, which increases risk of aspiration, yadda yadda. You know the drill, I'm sure.
(((Daniel and family)))
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