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The pump won the battle, but will I win the war?

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Saturday, June 11, 2011

The pump won the battle, but will I win the war?

I'm headed to bed. I have an arsenal of amazing pictures to sort and post of our weekend adventures. And yet, I'm stuck calorie counting and running the numbers again.

*UPDATE*

Prior to last week - Alexander took Trileptal and was completely lethargic. This medicine was making it so he would sleep almost 20 hours a week. He would eat maybe 1-2 oz a day orally. Maybe.... Then we had a seizure and things were re-evaluated.

Alexander was put on Depokate or Depokane or Valproic Acid.  Same drug - different name.  This drug does NOT make him tired and it has a side effect of increased appetite.  The combination of these two mean Alexander now eats: (drum roll please) around 8 oz of food a day.  This is stage 3 consistency baby food with some table food thrown in for practice.  Tonight he ate his entire piece of chocolate Ellaclare cake.  I mix duocal at a rate of 1 scoop per oz - so each ounce is about 50 calories..

We had also put Alexander on the pump overnight because of his total disinterest in suck/swallow.  Also - he needed the fluids and the calories.  He currently takes 12 oz in a 24 hour period.

Here is the FABULOUS conundrum.......
Before he was getting 100 cals from food + 400 cals from Ellacare + 50 cals from MCT oil (supplement) = 550 calories = 115 cal/kg  This is a great number for weight gain.

NOW.... he gets 400 cals from food + 400 cals from Elacare + 50 cals from MCT oil (supplement) = 850 calories = almost 200 cal/kg. This is extremely high.

How much liquid does he really need? should we try to get rid of the pump at night? we could bolus him some during the day to make a little up... and he could go back to sleeping through the night ....

The pump is just so.... *sigh* I hate that thing.  I hate to look at it. I hate to say we use it every night.  It is not what I want for my child.  However, it was a necessary evil.  I don't want to push Alexander too fast and I don't want to lose the ground we've gained by him being on the pump.  Also.... if this huge calorie intake makes him grow a little faster - then I will tolerate the pump for now.  BUT - it still comes down to - he is on a feeding pump every night.  As I type this, I find myself tapping the keys.  what to say - what to say?  Should I stop it?  Go back to bolusing during the day? How much actual formula liquid does he need if he is eating that much? Should we continue on with the pump and hope for a big payoff from these huge calorie intakes?

Thoughts?

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posted by Kristen @ 10:30 PM   3 Comments

3 Comments:

At June 12, 2011 at 10:12 AM , Anonymous Kisses4Kaylee said...

I would talk to your nutritionist and/or GI. We went to a new one, and she thought Kaylee's weight gain, while good because it put her back on the 50% curve for WHS, was a bit rapid. She said too rapid weight gain can lead to other problems. As a general idea or baseline, Kaylee's doctor recommended a total of about 500-600 calories for her. I do not know how much Alex weighs now for his age or where he is on the growth chart, but I think the general rule of thumb is to make sure he stays on his curve.

Jess had told me that you had syringes that go right into the button-- no need to use the extension for oil supplements. Can you tell me what they are, and what size you use? I think you have the mini, too-- right?

Lots of luck with figuring out this latest conundrum.

 
At June 12, 2011 at 5:52 PM , Blogger Shannon said...

Kristen,
Emma was never on the pump and didn't get nighttime feedings. We did all her boluses during the day, which worked ok for her and for us. She doesn't really take a measurable amount of calories by mouth (but is SO wanting to eat, just doesn't quite get it completely...). Anyway, I would def talk to maybe a dietician, does Alex have one he sees regularly that you could call? Cause you can probably just bolus water if he needs the fluids but not the calories. Emma is 4.5 years old and gets about 1000 calories a day, split between 4 feeds and we flush those with 40 mLs of water and give her 2 oz of water about a half hour before each feeding. Not sure if this helps or not, but I do want to say, it is SO SO SO awesome how well he eating by mouth! Way to go Alex, keep it up! And I would definately want to get rid of night feeds if possible, but that's just me and we never did them..... soooo.. good luck! Praying for you guys! <3

 
At June 12, 2011 at 10:32 PM , Blogger Kristen said...

We have serious issues talking to dieticians around here. Those are the only people we have had consistent issues with - either they are afraid of him because of his issues or they won't think out of the box for Alexander (like - you can't give an 11 1/2 month old Pediasure... you must wait an extra 15 days until he hits 1 year) or they can't seem to grasp why he won't put on weight. They continue to talk "catch up calories" no matter what we say. The one thing I insist is that all the people who work with Alexander take some of our input. Alexander is not going to magically become a 20lb one year old. Anyway... we've tried finding people in that area and so far we are really lacking there. Back to my questions - if Anyone knows the answers to these:
How many LIQUID calories (I mean nutritionally from formula or Pediasure) does a 1 year / 9.5 lb baby need)?
If he is getting all of his calories from FOOD, can he just get bolus water either at night or during the day?
I can't help but wonder if he is doing so well eating because he is getting his meals spaced out.... like calories over night so he can focus on being hungry and eating during the day.... if that is the case - maybe we stay on the pump and just cut it back (but then again, how far can I cut it back?)
I really want to give him his NUTRITION and CALORIES orally as much as possible. So - I only want to give him the least amount of nutrition and calories via g-tube as necessary.. if that makes any sense. Thanks for all the ideas. Keep them coming!

 

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