We are six weeks post surgery and a Mic-Key button was placed at that time. He also had a fundo and a operation to open the bottom of the stomach. He has reflux and slow gastric empty in addition to low tone from Down's Syndrome and a stroke suffered in utero. He is three months old now but big at almost fourteen pounds.

So here are some questions:

Some mornings there is snot in the tube when I vent him and I discard that. Then when I go to feed it is almost like it lavages the stomach and more snot and lots of air will come out. Sometimes it is very forceful and he turns red and seems to take a lot of effort. Other times it seems like he is having spasms. Then the feed will go OK after that.

Sometimes the feed goes fine but he wakes up after anywhere from twenty minutes to an hour with the above described spasms and will have a lot of air. It is expelled very forcefully through the tube like if he were to vomit. We vent out the air and put the contents back in and usually he is then fine.

We have started erthmyiacin (sp?) for the gastric empty and that seems to be making a slight improvement. It has been five days so when might I expect to see if this will work for him?

Last night we started Zantac on the advice of a friend who is a pediatric oncology nurse. She says they always put it in the bag for their kids and that is accurate enough dosing. Doctors script just says give 3 times a day via g-tube. I worry if the meds are really accurate in the bag because some is wasted when we prime and then some mornings the bag is empty and others there is some left even though we make the same every time. How soon should I expect the Zantac to give him some relief?

We changed the Mic-KEy or rather the surgeon did last week and it seems the valve is already leaking again. I thought they should last longer. We only use the extensions and mix the meds into the milk. We have to change it ourselves next week, should I ask our friend the nurse to stand by? She is willing and frankly we are nervous or is this really not going to be a big deal?

For anyone who was able to give their baby breastmilk, my supply is almost gone. Is it really going to make a difference if I can only give him six or so ounces a day? I had really intended that he would be nursed but didn't know all his health problems would prevent that.

He does not eat orally at all now. When should we expect to work on that and what should we be asking for?

I appreciate any and all input. I know this is a lot but I just don't have any parents locally to ask and I am making a nusiance of myself with the docs.

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Mom of eight here on earth and four more in heaven.

I'm going to copy/paste a reply that I just posted on someone's blog who is also new to gtube feeding. I hope you don't mind, I just didn't feel like typing it all out again.

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Oh, we have so been there with the gtube. My daughter Angela (now 11) was on a gtube from 11 months - 3 1/2 years old. She has some un-named connective tissue disorder and CANNOT have tapes, etc on her skin, as she starts breaking down within a few minutes.

I do have some tricks for gtube stoma leaking though! First, if he’s already on a button, those balloons do…somehow, I don’t know how it works…loose volume and start leaking more and more until eventually the balloon pops and you need to replace it. Has anyone shown you how to check the volume of the balloon AND how to gage if it’s too tight/too loose/just right? It sounds to me like it’s fitting too loose.

Second, if there is some leakage, you can order 2×2 IV sponges. These are 2×2 gauze pads that have a slit cut in them. But it around the base of the tube between his skin and the button. This will absorb some of that leakage.

I swear that changing a g-tube is SUPER easy. I was scared to death the first time, and then I didn’t have a choice as Angela’s popped at home. (later she learned to pull them out fully inflated!) I had my then 11 year old son hold her hands while I carefully read each step of the directions that were on the package. When it was all done my son said, “So..why was that so bad? What were you worried about?” I told him, “Ummm HELLO! That hole goes right into her stomach!” His response? “OH COOL!!!” From then on it was a piece of cake. I learned lots of tricks, like “lubricant” can mean anything EDIBLE that will allow the tube to go into the stoma easily! This includes peanut butter, butter, vegetable oil, ANYTHING, cuz after all, it’s going right into the stomach! This comes in handy when you’re sitting at a restaurant and your kid says, “here mommy!” and hands you a feeding tube!

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Ok, for meds, you can put a small syringe directly into the button! If decide to use an extension instead, just give a one ounce water flush afterwards.

Mic-Key's usually last 6-8 weeks, but there are alot of variables involved. Sometimes Angela's would have lasted longer if she hadn't pulled them out!

For the oral feedings, ST and OT are REALLY important right now to keep up the oral stimulation so he doesn't forget hot to use those muscles and coordinate everything.

Somewhere on Yahoo there is a gtube listserve. Scroll down on this page and you'll find the link.
http://www.new-vis.com/fym/l-mllsts.htm

Hang in there. You're plugging right along, and he's gained a lot of weight! That has to make you feel so much better that you know he's not going to waste away, and you don't have the stress of getting every possible ounce into him!

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~Leah~

Did you vote for my mom today? http://www.blogforayear.com/profiles/leah

http://www.gardenofeagan.blogspot.com
mom to Noah 20, Tyler 18,Angela 11 (DS)

Talitha's mic-keys last around 6 months on average but the valves do go within the first couple of months. I have replaced hers twice now and it is a piece of cake. If you are nervous it is good to have someone there to reassure you that you are doing the right thing.

Talitha often has snot in her tube because she is a snot factory and swallows heaps of it. Also when I vent her tummy sometimes it is like a volcano of air and stuff. She strains when I am venting and that makes it more explosive. I don't know where all the air comes from but it is inevitably there.

With meds I always give them through the extension tube direct to her tummy unless I am giving her a small feed and I know she will be given all of it. Otherwise I am not sure she is getting the full dose. I try to give meds before a feed so I vent her tummy, then give the meds then put the feed on top.

I expressed breastmilk for Talitha up to 6 months but by then was only getting a trickle. I was upset that I couldn't breastfeed her as I fed my others but at least she got a few months of breastmilk. I worked on the theory that any breastmilk she got was better than none. It is almost impossible to maintain a supply when they are not nursing.

Talitha is only starting to eat orally now but she had severe trauma to her esophagus from the ng tube and that put her totally off oral feeding. We also had to make sure she wasn't aspirating and have a swallow study done before any serious attempts to feed her orally. I am still not convinced she is not aspirating although she didn't aspirate during the study and swallowed ok. You need to have that done for your little fellow just to make sure all is well before you start oral feeding but unless there is a medical reason not to you can start trying anytime.

It is good that he is putting on weight well, that is one less thing to worry about. Zantac may or may not make any difference. It didn't seem to with Talitha but it works for some.

Please feel free to keep asking questions. I actually found that the doctors didn't know half the things I wanted to know because they haven't actually had a tube fed child and dealt with the day to day stuff. I got all my good info from this forum.

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Karyn
Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Talitha is so cute! I can't wait to take Nathaniel to the beach this summer. Thanks both of you for the input. Yesterday was really bad but so far today is going better.

I just really want the retching to stop.

He had an RSV shot yesterday and she weighed him at 14#3ounces.

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Mom of eight here on earth and four more in heaven.