Saturday, July 18, 2009

The Annual Summer Stoma Infection

I believe this is the third summer in a row that Eli has gotten a nasty stoma infection. (stoma = hole in his tummy that the G-tube is in) When the weather gets hot....his tummy becomes a sauna. Bacteria and Yeast decide to take over. Yuck. It hurts him and I hate it.

{I'll spare you from seeing a pic - it's not fun} {you're welcome!}

He's been fighting this one for two weeks. It's looking better, but he's having discharge during sleep and waking up with a moist belly (as he sleeps on his tummy all night)....and then the stoma looks red again. By evening it looks great as we keep meds on it all day...I haven't experienced this night time leaking before...and I'm going to get concerned if it doesn't go away soon!

The doctor had prescribed a sulfar based anti-biotic at first. Eli had a bad reaction. It gave him a tummy ache, woke him up in the middle of the night and he was miserable for two hours, and then the next day he had weird rashes on his legs! We quit giving it after only two doses...and quickly made a note of it for future reference!!!

Our doctor came up with the brilliant idea to treat Eli's stoma infections, by using anti-biotic EAR drops on Eli's stoma.
A) You can drop them right on the infection.
B) They are safe for the g-tube, because they are safe for ear-tubes!!

We've been using the Tobramycin drops (for the bacteria - it was cultured at the dr. office to find out what exactly it needed to fight it) and some Nystop powder (for the yeast that showed up in the culture) 3-4 times a day for two weeks. It wasn't healing completely, so we finally started giving him the Amoxacillin anti-biotic a few days ago. Doctor prescribed 5mls - twice a day, we are giving 2.5 mls - twice a day.

The number one thing we've learned along our journey is: WE have to decide what is best for our son! No one is going to come knocking on our door and say "Hey have you tried this?" or "Hey, have you heard of this?" Sometimes we feel very alone. We almost always tweak whatever the doctor tells us. They give their best opinion, based on what has worked for others in this "population". (Yeah, that's what they call kids like Eli in the medical world. Hate it, but it's efficient, I guess.)

But, ultimately, Eli's body is very sensitive to all changes. Anything going IN him needs to be carefully decided upon, and monitored closely! We keep track of everything, everyday, in a notebook. It sits on the kitchen counter. All foods, meds, naps, diapers, teeth brushing, therapies, trips to town, behaviors, wake up time, bed time, and amount of his night feed, etc... get written down! Then at night, I have a small notebook by my bed, that I keep track of night time happenings. Wake ups, stirrings, spit-ups, etc.

THESE BOOKS ARE INVALUABLE!! If Eli starts to have an off day, we can look back and see what's different....that might be causing him discomfort. Not to mention the fact, we can look back and see what we used to do, and how much he really has changed! :)
So, what tips can you share about caring for your special needs children? Feel free to leave a tip in my comments, or a link to one of your blog posts!


Candace said...

I love your notebook idea! We have something similar but we don't journal every day. Could you make a CP button for Faith with a ladybug on it? We call her our Ladybug and her room is done in them. My sis also loved your giraffe one! My email is I couldn't find where to email you. My computer wouldn't pull up an email for you. So Eli's stoma gets an actual infection? When Faith first got her tube we had alot of granulation tissue for the first yr and they used a little silver nitrate, I think to cauterize it. What kind of gtube does he have? Faith has a Bard Genny.

VR said...

I don't know if the doctor has tried, or if you have tried probiotics? There's a powder form that can be added to yogurt, or milk or even juice and it helps to keep the digestive track balanced. It is very good at keeping yeast infections at bay as well as keeping the good bacteria in balance to get rid of the bad. And it is very good during and after taking antibiotics to get the body back into balance. I don't know if this will help, but it might be worth looking into. The journal is a wonderful idea and it looks like the best thing you can do to make sure Eli is comfortable without trying to guess what might have caused problems. I hope Eli gets to feeling better quickly!

Candace said...

Thanks Amy!
I sent you an email, too! LOVE the buttons, they were GREAT!!!

Michelle said...

Hi Amy, Wow, I'll have to remember the ear drops. That sounds like a good idea. Sometimes when Emily's tube is yukky I use Duoderm (spongy not thin) around it and it helps the skin to heal. If you want some for a future trial I can send you some. I just cut a line to the middle, cut a circle (to accommodate the tube), and then tape it to the skin. Works pretty good for barrier as well as healing.

Cjengo said...

We have a notebook as well where we record every bottle, etc.

Katy said...

Wow. you guys are making me feel like a total slacker. I just sort of wing it with trying to remember. Of course, most days do follow the same general schedule.