Thursday, April 3, 2008


We are down from 32 lbs to 26 lbs. In thirteen days. I am trying all I can to get this kid to eat and drink. He did drink a little from a straw sippy cup today, but most of it just ended up on his shirt.

He will eat Goldfish crackers and Ice Cream. But that's it, and he doesn't eat or drink enough to sustain anything.

I am wondering if he needs more Pediasure than what we are giving him. You would think with a feeding tube he wouldn't be loosing weight. I dunno.....just stumped.

He is still so gurgley and so drooly, and it is thick stuff. It's weird.

He doesn't seem to need any pain management at all. Maybe a little Tylenol before bed, but that's it. He is also sleeping lots. Monday night he slept 15 hours straight.

The last two nights its been 13 hours straight. I hope he is just still recovering. It will be 2 weeks tomorrow.

At least he is still giving me the smiles, I love those smiles.


Megan said...

Love the new cute!!
That stinks that Rhett's loosing weight, hopefully he'll get his appetite back soon!
We're glad that he's bouncing back from surgery. (:

Niksmom said...

Dumb question, I'm sure, but...what does the doc say about the weight loss and the sleep? That sounds like an awful lot of weight in a very short time...

Tami Acord-Nelson said...

Hey Pam,
Thatch is really having a rough time eating too. He is also having a lot of bowel issues. Maybe that is why Rhett isnt eating? I dont know, just a thought. He sure is a cutie! hat video yesterday makes you want to gobble up his sweet little cheeks!
Tami and Thatch

somebody's mama said...

E's weight losss was identical. The nutritionist told us that at her regular weight she needed three to four Pediasures per day.


Marla said...

Wow. I wish I had some answers for you. I bet sleeping is natural considering all he has been through. I know after my surgery I slept constantly. I still sleep more than normal and it has been months.

I hope you are able to get some answers on the weight soon.

Katy B. said...

Hi-I've 'stumbled' onto your blog! I've been lookiing at different blogs recently about families with children with DS-I have a 2 year old son with DS. His name is Grant and he is the love of our life!
I thought to post, not only to say hello, but to tell you that my son was in the hospital the first 2 months after he was born, partially because of an esphogus repair surgery and because of feeding discoordination. He had an NG tube for awhile, but then as going home started to draw near, we decided to but in a G-tube directly to his stomach. I don't regret the decision at all, especially considering that he still has it now (we are working on oral feedings and he's getting much better!) so the NG tube would not have been a good long-term solution.
It sounds like you have struggled with that darn NG tube, so I just wanted to jog your thoughts on maybe asking about the G-tube. It may not apply in your situation and of course, who the heck am I to be offering a suggestion when you don't even know me, but despite the initial surgery and getting used to it, it's been a blessing and quite easy to use/manage.
Hope you and your cute family have a great day!

Childlife said...

Hi Pam ~

You might want to give a nutritionist a call... are you working with a home health company?

I know that we always had to boost Jacqui's caloric intake during the recovery phase after a surgery because the body's caloric needs are higher while it is healing following major surgery.

I'd suggest asking for a dietitian/nutritionist (preferably one with experience in pediatrics) to review his chart and see what his intake should be during his recovery phase. If that doesn't work, try paging the GI doc that followed him in the hospital, tell them what is going on and ask them to review what his caloric intake should be. I would also ask them to check and see if his fluid intake is ok. It's easy for the little guys to get dehydrated after surgery. We always had to boost Jacqui's fluid intake too. Hope you get some answers soon!

Becca said...

Hi, Pam! I'm so glad he's not in pain, at least. I'm sure he'll be back to his old self sometime soon. And the smiles certainly help! He's such a cutie!

Thanks for checking out my blog! Yes, of course, feel free to link to it on your site. Coincidentally, I saw your post when I was adding Rhett's new button to my site--Rebecca did an amazing job setting everything up--it looks great!

Becca said...

I couldn't figure out how to edit my post, but I wanted to answer your question--Samantha will be 2 on May 30th (she shares a birthday with Michelle's Matthew!). By the way, if you link my blog, feel free to call it something else, like Sammi's Page. :-)

Lauriann said...

hey pam ,
when riley had weight gain issues he was referred to dr. jackson in the nutrtion clinic at primarys . keep that in mind ..... if he is still sounding surgly I would have your peidtrican listen to his lungs just in case he doesn't have anything on them also it could be he could still swollen and slowly healing from the surgery .... glad rhett like the frogy sippy cup ... he was so cute playing with riley at danielles house... it was good to see you both... lots of hugs to you all ...

Dream Believer said...

Hey Pam,

As you know, Johnny just had some of the same stuff and has his new g-tube for feedings. He's just starting to be allowed food by mouth (puree only) but is still on 36 oz per day/night of pediasure. We're working closely with a pediatric dietitian. If you don't already, I'd call one and ask what Rhett's intake should be. Johnny's had a hard time adjusting to the feeds but is now on a pump of 6 oz over a period of one hour 4 times per day and around 14 oz continuous feed at night or split into two 6 oz feedings. Confusing, but total of around just over 4 8oz cans per day PLUS any food he may be getting by mouth. (which isn't much more than just a couple of bites at a time at this point). I also wanted to mention that aside from the night continuous feeds, Johnny is getting one ounce of water after each feeding too.

Once he was able to handle more pediasure and started pooping regularly (has required babylax as needed and miralax daily to not be/get constipated) he has been a new man. Happy, cheerful, and healing much better without being so crabby and grumpy. And best of all, SLEEPING better.

Thinking of you guys. And Happy Anniversary! 10 yrs is awesome. :)