You can find the beginning of the Neocate saga here -
With Neocate Jr. making Aidan sicker and sicker, we have known for some time that we have to change something. And actually, we've been trying to make meaningful changes - it's just difficult to know what constitutes "meaningful" when we're trying to change a process that's previously worked nearly perfectly for over a year. And the frustrating thing is that you really need to wait a week or so between making any changes before making another one - just so that you give it time to actually help, and so that you know which change is helping (or making things worse!). I feel like everything about this disease boils down to waiting...
First, we reduced the amount of Neocate we were feeding Aidan. At his last appointment in January, shortly after the vomiting started, his doctor requested that we increase his daily target to 48 ounces. FYI - 48 is a lot of ounces for a 25 pound toddler. This had us feeding a whopping 24 ounces at night along with four 6oz feeds during the day. Too Much! Our new target became 42 ounces - which may not sound hugely different to you, but to me it sounded excitingly like six fewer ounces to mop up.
Then we waited. And it didn't help.
Next, we changed the delivery. We had been doing overnight feeds at 71ml/h and daytime feeds very quickly via gravity (by way of syringe - so - very quickly). Now, we are pumping daytime feeds over 30 (breakfast and dinner) or 60 (lunch) minutes. Huge difference.
Except not really, because nothing improved. In fact, overnight vomiting actually seemed to get worse.
After three days of the new feed plan, I'd had enough. I called the nurse. I called the doctor. I called the nutritionist. I even called our Occupational Therapist. I was desperate - someone needed to help us. Not for the first time (and probably not for the last), our nutritionist came to the rescue. "Start the Elecare tonight. You do not have to transition him.", she said. Music to my ears.
So 3/1 would be our first night off Neocate Jr. and on Elecare Jr. I was really nervous, because Elecare hadn't traditionally been a great solution for us - but desperate times call for desperate measures.
With Neocate Jr. making Aidan sicker and sicker, we have known for some time that we have to change something. And actually, we've been trying to make meaningful changes - it's just difficult to know what constitutes "meaningful" when we're trying to change a process that's previously worked nearly perfectly for over a year. And the frustrating thing is that you really need to wait a week or so between making any changes before making another one - just so that you give it time to actually help, and so that you know which change is helping (or making things worse!). I feel like everything about this disease boils down to waiting...
First, we reduced the amount of Neocate we were feeding Aidan. At his last appointment in January, shortly after the vomiting started, his doctor requested that we increase his daily target to 48 ounces. FYI - 48 is a lot of ounces for a 25 pound toddler. This had us feeding a whopping 24 ounces at night along with four 6oz feeds during the day. Too Much! Our new target became 42 ounces - which may not sound hugely different to you, but to me it sounded excitingly like six fewer ounces to mop up.
Then we waited. And it didn't help.
Next, we changed the delivery. We had been doing overnight feeds at 71ml/h and daytime feeds very quickly via gravity (by way of syringe - so - very quickly). Now, we are pumping daytime feeds over 30 (breakfast and dinner) or 60 (lunch) minutes. Huge difference.
Except not really, because nothing improved. In fact, overnight vomiting actually seemed to get worse.
After three days of the new feed plan, I'd had enough. I called the nurse. I called the doctor. I called the nutritionist. I even called our Occupational Therapist. I was desperate - someone needed to help us. Not for the first time (and probably not for the last), our nutritionist came to the rescue. "Start the Elecare tonight. You do not have to transition him.", she said. Music to my ears.
So 3/1 would be our first night off Neocate Jr. and on Elecare Jr. I was really nervous, because Elecare hadn't traditionally been a great solution for us - but desperate times call for desperate measures.
Hugs to you and Aidan. Hope the Elecare is working out.
ReplyDeleteThanks Justine :) At the very least, it feels good to be doing something :)
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