Lauralee/Janice/Lauren

[Anonymous]

Hey there….

we are getting the Gtube FINALLY/…. some time in the next couple of weeks. I was wondering whether you could please help me out with some stuff…

– how long was your baby at the hospital? Our GI said probably 48hours if he can handle the tube feedings well and also some food orally.

– how did you take care of the stoma… a lot of people in the other board think it is best to leave it alone… but i know something about a silver something cream?

– how long was your Gtube? My GI will make it whatever we want and i have no clue. Some people said between 8 adn 12 inches. Some people wrapped it in an upside U, my GI said you could coil it around the stoma… what did you do?? Also at night, for feedings… how did you manage? Some people left the tip of the tube out of the top of the pjs others said that they run the tube down the legs of the pjs… any tips would eb appreciated!

Laura – how good is the button?? I am already dreaming about it and we don’t even have the Gtube yet… hope Christian is eating a bit better and don’t remember whether there is any update from ENT?

Janice – been reading up on Samantha… seems like she is doing pretty well (less sinus??). Glad all the tests came back negative adn good luck with the injections

Lauren – i am glad your trip to Atlanta went well… seems like you have a good doctor.. please keep us updated on Emma and the results of the tests… you have a little fighter in her!

[Anonymous]

Well, we have a gtube but it’s a bard. My son’s doctor used it instead of the kid with a stoma. It’s really easy to care for, but gets infected quite easily and frequently. We wash around it twice a day with hydrogen peroxide. My son was still in the NICU when they did it, but I would say it was a week or so before he felt back up to par. Night feed are great. We use botton up onesies and just unbutton the one where his button is and it doesnt even wake him.

[Anonymous]

Hi Thais,

I’m sorry to hear Matthew is having to get the gtube. Trust me, I know how emotional that journey is & how nerve-wracking it is getting to that point. The only people who can really understand being at that point are those who have been there before. My best advice is to stay positive (aka have some wine…rent comedies…cry when you need to…get out of the house…LOL!), keep humor as the theme (especially when the gtube leaks or you have stomach contents squirting up at you…lol…you really will laugh at that when it happens!), & take everything one day at a time!!

Emma’s surgeon did a mic-key button immediately. We were pretty lucky–no waiting with the tube. I would see if the doc can do that. Benefits of the mic-key are you can change it yourself (which, after the first go is a breeze! Just stay calm & remember the mantra “I think I can, I think I can”!!!). It locks in which is GREAT for night feeds & toddlers! Easy care too.

Emma had a fundo at the same time, so her recovery was much different. I think had we just done the gtube, it would be a 24-48 hour stay, dependent on how she tolerated feeds. Being that he has the NG tube, it may be an easier transition. Emma did a lot of retching & had other issues–which were most likely from the fundo & neuro issues. I hope Matthew does great & is home in no time!

How we care for the stoma:

We’ve tried everything…our new approach is to change it up from time to time. Normally, during the day, Emma has nothing on it (no gauze, no tape, etc.). I wipe it with a cotton swab, etc. just with some water at each diaper change. In the a.m. & before bed, I wipe it with California Baby diaper spray, then with a cotton swab of water. If it looks red, I will put California Baby diaper cream around it (it works the best, I’ve tried everything!! it has anti-fungal properties, so I think that’s why it’s been so good) OR if it’s really getting bad, Hydrocortisone (prescription strength). At night, I usually put lots of cream on an IV-cut gauze pad, put that around the button/stoma. If she is having a rough day or coughing a lot, I will put Tegaderm over area for nightime only. ALSO, if we are going to the park, a party, etc. anywhere where there will be lots of people or activity, I tegaderm (w/ the gauze) her site too. Just a bit of reassurance that it won’t get yanked out.

Find a very sensitive baby wash (FREE of everything) for bath time. Let the water come up over the stoma so it soaks during tub-time. After bath, make sure you DRY the area very, very well. At times, the discharge around Emma’s stoma has been clear like saliva to yellow/green & even some blood if she has granulation tissue building up (then she goes to the doc, they put silver nitrate on it to remove excess tissue). If the granulation becomes a major issue, they might give you an rx for it. For most kids, it’s not something that recurs.

If you do get a button, or any gtube you replace yourself…stock up on them! We keep one or two in the house, one in the diaper bag, & usually a spare in the car too. I carry one with me at all times (would stink if the mic-key pops out in the middle of the mall & I couldn’t replace it asap!). When we replace it, Emma lies very still (think she knows what’s going on). We draw out the water from the mic-key in her tummy, remove mic-key. Put KY Jelly around balloon part of new mic-key, put back into stoma (actually much neater, & not nearly as gross as one’s imagination might make this whole thing out to be!! I thought it was going to be much worse–it is odd seeing a hole in your child’s tummy…but you get used to it!), then push the 5-10 cc (or whatever amt your button requires) into the balloon valve & you’re done!

Some people say to check the valve daily or weekly, to see how much fluid is in it. We don’t do this because we read that can weaken the balloon, so you end up replacing the mic-key more often. We’ll notice it sticks out more & then check the fluid level. We usually replace fluid if needed to see if that fixes the problem, if not we replace the button.

For nighttime, I swear by Babystyle PJ’s…they are button-down & you can weave the tube (tubie as we call it!) under the diaper tab, through buttons in onesie crotch, & then perfectly between two buttons between the legs. They just lay perfectly for the tubie! Anyway, if we haven’t tegadermed her mic-key, then we put a bit of tape on her tube & pj’s so it stays put. That’s it. When she wakes up, she’ll play with her tubie, or just hold it…sometimes kinking it, but other than that no issues. We DO tape the medicine valve at bedtime (we have woken up to it being open…formula ALL over Emma & the crib=no feeding that night! From that night on, we always tape the med valve).

If you can get a Zevex pump…GO FOR IT!!! We started w/ a Kangaroo…headaches!!! Now we have the Enteralite, but are working on the Infinity. Emma is almost solely tube-fed & it’s hard to keep her occupied during the day at home to take a feed (we’ll do it while on a walk, etc.)…the Infinity is small enough to put in a special mini backpack that kiddos can wear during the day. Emma will probably be strong enough to use that before too long, so I’m hoping the ins company will approve it!

Well, I think that’s everything!! And then some! I have heard the NG tube can make reflux worse & affect sensory issues–that is one reason they went right to a gtube for Emma. So, hopefully you will see some other benefits from it as well. I pray Matthew does GREAT & that he is gaining weight and blossoming in no time. Email me w/ any questions. TAKE CARE!!!

[Anonymous]

Lauren

THANK YOU THANK YOU for taking the time to read this and put together such a thoughtful answer… i was wondering how you were doing back from your trip… i try to check your page for updates but please please post too! We would love to know how Emma is doing these days…

Well it has been a tough 10months but my baby is doing well and we thank god everyday for that. He is thriving with the tube and we just love that. He is now a bit chubby (well compared to what he was obviously) and eating less than ever LOL! It has been tough getting here but we have been pushing really hard for the Gtube. I cannot deal with the NG any longer – i know you did not go through it but someone else in another website described it perfectly – she said it was like raping her daughter everytime she had to put it in… tying her hadns, putting her down in bed and putting sommething inside her body that made her choke… i know not the same but really the tying down is getting too much and i am becoming way too emotional to take care of it… it breaks my heart to put it back when it comes out adn it breaks my heart that his face is so itchy from the tape etc etc.

I try to take one day at a time – i am sure that you do too. Sometimes it is hard when he eats nothing and cries all day and does not sleep but he always amazes me some other way. I have a wonderful husband and a great family and a bunch of wonderful friends and that keeps me going. But i do indulge in a beer at night, when Matthew is in bed and i am putting together the schedule for the feeding clinic… funny about the tube leaking… Matthew’s NG opens all the time and he is so dirty all of the time!

We are getting a PEG first and tehn a button… our GI will not do otherwise and we really like her. I guess we have dealt with the NG and we will have to deal with the PEG until we get the button. On the pump thanks to another wonderful forum i found out all about HHC companies and about pumps so i spoke to one and they approved the infinity!!! I just got it today and will have to learn how to use it. Please let me know if your insurance does not approve it… we can try and work something with the people i am using!! They are great and they accepted my insurance even though out of network and they will not get 100% reinbursed (but i guess that they want the business)… don’t know how these things work.

We are calling tomorrow GI to set the date… it is such a bittersweet moment but i guess you know, so you understand what we are going through.

Anyway sorry for the long email… i keep praying for Emma and she is in my thoughts in this journey with Matthew!

[Anonymous]

We have the Infinity pump and we love it! OUr care patern is very much the same as Lauren and Emma’s, we have compared notes many times and (I think) helped each other out a great deal. Samantha has problems with yeast infections around her Mic-Key b/c of her supressed immune system. So twice a day she gets Dr Sandell’s butt cream on it (not as bad as it sounds) It is a compounded ointment that has about everything in it that you could ever want. It keeps her from getting yeast infections. We use it on her bottom also for the same reasons, we get a small container for the button and a large tub for her bottom. Using it regularly seems to cut down on the granulation tissue for us. Also, after the bath, we dry her button off with the low setting on the hairdryer (dont know if it helps but she likes it and now demands it) As for the recovery, I can not tell you about that b/c Samantha had the fundo done at the same time.

Is Matthew on Neocate? If he is, make sure that it is well mixed and has no bubbles in it before you put it in the infinity bags, they can make you crazy if you dont make sure of both.

Thank you for asking about Samantha, she seems to be doing OK. We are giving her omnicef now b/c her congestion is orangish/green and she has a little cough and low grade fever.

Hope that I answered all of your ???s

[Anonymous]

Thanks Janice… yes i think i got all the answers i was looking for… for now that is :-). Matthew is not on Neocate but i had a terrible pump in Spain that use to beep all of the time.. + Matthew moves like crzy at night so that sucks too… he is no longer on continous feeds (for now at least) so it is not that bad. Sorry to hear Samantha is still not feeling better…. sending prayers your way! I love her pictures!! Her and Lance are cute

[Anonymous]

I am such a slacker – I just finally have time to post.

We had a 48hr stay at the hospital for the peg. 24 with no food and 24 with feeding to make sure all works and no issues.

We used dial soap or any antibacterial soap 2 times a day for at least 2 weeks. We didn’t use any special creams until a staph infection popped up and then we used bactroban ointment. When the granulation tissue became an issue we started with triamcinolon cream and apply that 2x a day.

The button has been fabulous. It is great to not have the long tube dangling any more. It has been a savior since the walking is full force now.

To keep the tube from dangling I would coil it up and tape it with Hytape – doesn’t leave a sticky residue. or I would stick one side under the left velcro and one side under the right of the diaper.

The night feeds we ran continuous and would use snap down jammies or just a t-shirt (till he just learned the diaper removal thing) and leave the tube hanging out for easy connecting. We are now running bolus every four hours to establish a pattern and no longer feed him at night.

We used the Zevex entralite loved it – it fit in a fanny pack and I could drape that over the bjorn easy to move about.

Got changed to the Kangaroo Epump – we loved it but it was loud. Then now we are changed to the Kangaroo PET – not very user friendly – the epump had fabulous options (you could hook them up and set up a delay in feeds) So if you wanted to hook them up at 9 and not start it until midnight – program the machine and it would start at the time you set it for. Basically look for anything that can be hooked up into a backpack system or portability…they all can hook to the iv pole in the house.

Lauren – DUH! I didn’t even think about making sure that I have a button in my diaper bag. Have to run and do that now. Can’t believe I didn’t think about that.

Let me know if you have other questions – tried to hit on all the ones you asked.

[Author]

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