Tuesday, September 15, 2009

Tuesdays update

Other than constantly changing ostomy bags, today has been relatively quiet. Riley is still passing stool out of his incision at a fairly steady rate. He did have some discharge from his bottom just a while ago, and that is sad and great all at the same time. Sad because it sure reminded me of all those dirty diapers I was changing finally last week. But great, because the more that passes that way, is less to come out of his incision.

During one bag change this afternoon, Jay and I discovered a lump on Riley's chest, kind of near his armpit. Surgery says it's a lymph node. We have no idea how long its been swollen, as its not in an area we normally pay much notice to, like say his abdomen. It is likely it has swollen in an infection response. It is the only one that seems swollen that we have found. We as well as surgery will be keeping a VERY close eye on this as well. I asked Riley if he was just trying to show us all his tricks again.

He got to eat formula today and seemed to enjoy doing so. He can only have small amounts right now, as his intestines don't seem to be actually absorbing much. Due to this, he will start on TPN tonight. You can read about all you ever cared to know and then some at that link, but the short of it, is TPN is IV nutrition, that will be given through his central line, along with Lipids (which are just fats). This is to try and maintain his nutrition and weight. Even though he IS eating right now, as long as his intestine's aren't doing their job of absorption, he isn't getting all that many benefits from eating. This will help him out a little bit. It is not without its own set of risks, which you can read about at that link if you would like. He was on TPN from about 7 days old until 3 months old previously, so it's a process we know well. We absolutely HATE to see it be brought in here and hung up and flow into him. But we really have no choice at this point. His weight is dropping too fast, and IF he were to get an infection, we can't risk him being too weakened by malnutrition to be able to fight it. So TPN it is.

I think that is the short of it for today. We are very hopeful that incision drainage will hurry up and stop (and by stop, we mean, it's all out of him so nothing else to drain). We really want to go home. :o(



Anonymous said...


I just found your blog about 2 weeks ago and just want to scream in frustration for your sweet baby. I have prayed for him and will continue.

Anonymous said...

Keeping baby Riley in my thoughts and prayers. Praying he will have a restful night. Sending Hugs to you all. Hugs, Pauline

oleyfriends said...

I found your blog and wondered if you had heard of the Oley Foundation.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular I wanted to tell you about a treatment for infants/children on TPN who have liver disease -- it's called Omegaven, and it's an alternative IV lipid source for kid's TPN. Follow the link below to read more about it.

• Omegaven -- a new treatment for liver disease in children on TPN

You might also be interested in meeting other parents who have been there, done that. You can try these links below -- or feel free to contact me and I can make a more personal match.

• Meet Patients Section (try all three links)

Finally – a great resource for home TPN.

• TPN Complication Chart

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY


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