G-Tubes anyone?

[mswizard]

was wondering if anyone has had to deal with them? Emmy's apt Friday went real bad (I Knew it would) She isn't growing and now she isn't even on the growth chart for DS. She has only gained 4 ounces in 3 months. I have to bring her in Tuesday for blood work to check her thyroid and some other things. It may be because she can't regulate her body temp and the shivering uses up all the calories she takes in, it could be her thyroid, it could be a million and one things. I was chatting with some mums and dads online that have had to deal with G-tubes for years! That scares me!..I can't see Emmy getting fed through a tube everyday for God knows how long...it would be such a huge step backwards for her. At her OT session Thursday Tina noticed Emmy was real yellow, I noticed it too so we are having that checked as well, I don't get it...she eats...she don't have the runs..I just don't get it. OH..and to top it all off, my neice called me today to tell me my mom disappeared today, just got in her car and left..Mom hasn't been able to drive in almost a year!

[mswizard]

oops! I hit the submit button.

Any how, we found mom, she drove herself to the store! (My little sister went into re-hab 4 days ago and mom is kinda lost without her!)

[angelwithin]

hiya wiz

my son had a NG-tube (through the nose) for 8 weeks - its real scarey the first few times you put them in but you'll be amazed how quickly you adapt and become an expert at changing them, cleaning and syringing in the feeds, i even trained a new nurse on the ward how to do it :eek: ...i know its scarey unchartered waters for you but if it helps our little angel grow strong and healthy it's got to be a plus point hasnt it ;)

fiona xx

[mswizard]

Thanx Angel,
I think where my problem is with all of this..WHY mention placing a G-tube in the first place? She eats and eats well...I don't understand how a tube is going to stop her from being cold all the time or make her gain weight where just plain old eating doesn't. Do they feed her like 5 million( Exageration I know) calories or something? And the step back I was talking about is I was also told they will have to completely RE-DO her therapy, See, I don't kno0w the why's to that either. The more I think about this the more I am hoping she has a thyroid problem and just has to be on meds for it.
Emmy only weighs 12 pounds but she doesn't look like she's starving, she has pudgy little cheeks...

[crops2dawn]

Wiz, sorry I cant help with your question but just wanted you know I have her in my daily prayers.... I just hope you get some good news soon... cause you all sure have had your plates full!!!! thats for sure! xoxoxo hugs to you and yours!

[GrannyScraps]

I'm sorry I don't have any words of wisdom for you.... but I do know it's scary when our little ones aren't doing well.... I can send you some {{hugs}} and get you and Emmy on my prayer list....

[pkdoll]

I used to work for a pediatric gastroenterologist and we had many children that came in with G-tubes. It can be extremely scary for a person. But like most things, once you learn about it and work with it you will be amazed at how routine it becomes. It's very important to keep it clean tho. To prevent any type of infection. Sometimes children just don't get the nutrients they need even tho they eat good. It's a breakdown in their little systems. Don't worry too much about it Wiz-it will be easier than you think. But it is inconvenient that's for sure. I feel so bad that she is having these problems. She is such a sweetheart and has such an amazing mom!! Hopefully things will turn out for the better and they can find out why she isn't gaining weight. I will continue to pray for Emmy and you and know that you are in my thoughts daily.:)

[Granny]

Sorry to hear all this Wiz... Hang in there girl! Pulling for ya.

[fourfoxes]

I've added you and Little Emmy to my prayer chain. Don't lose faith. Try to remember that God doesn't give us more than we can handle. (I know, easier said than done)

Sending you both BIG {{HUGS}}

[rosana brito]

Wiz, has much faith in God, who nothing of tube to need to use ok
Ours prayers is every day for Emmy, and not if it worries that it does not gain weight, the times and better not to fatten in such a way wise person?
OMG! As I wanted to be close to you, for helping it in everything what it was necessary, it donates to me to be far from you Wiz, but it knows that Emmy this of our hearts inside, e much love and affection for it ok

It is in Peace, God Blesses

Kisses
ro

[*eng*]

I can't offer any answers, just want you to know that I'm amongst the many willing everything to turn out fine. I am sure with your love and determination it will xxxx

[makeyesup]

Oh Wiz, sorry to hear there have been more troubles coming your way. You are all in my prayers and will stay there always.

[O2BNGdHope]

Wiz, I don't have any experience with G-tubes but I know a lot about worrying. I know that you have to take care of your emotional health, too. I know you can't stop worrying but take some time to rest yourself. I know you are heart-weary but don't let your body get weary, too. Your life is in turmoil right now but you must take care of yourself. Eat right, take your vitamins and get plenty of rest......or we'll sic Dr. Marion on you! :D

[wolvsie35]

My dear GF!!!, I had no clue... I am so sorry, please keep me informed, and we have added Em to our nightly prayers as well...She doesn't need all this and neither do you...Call me if you need to vent...k? Love ya...

[Marion]

I am so sorry Liz, that you have to go through all of this. Just know that we are with you!

[OnieRN]

Hey Wiz,

I thought about you and Em today! As you all know, I'm a School Nurse at a Middle School (grades 6-8). Next door to us is an Elementry School. The two of us nurses, cover for each other, when needed. That nurse there is very pregnant, and I need to be available, if I need to cover!

She has a 4 yr old boy, who has Downs and has a G-Tube since a baby. I needed to go review his feedings, so I went to do his G-Tube feeding. WHAT a precious little boy! He does know the drill! The feeding went so well. When we finished, I helped him down out of his chair, and he gave me a high 5 then a hug! I know this situation is scarey for you but trust me, it was an easy process!

I just want you to know that you have a lot of support here in the forum, and we all know that you'll do great. They will make sure your trained and comfortable! Also, I'm just a phone call away, if you need some extra encouragement! :D

[sacannon]

I am glad others have been able to give some insight here. I do not have children so I am of not help at all, but I am pulling for you along with all the rest. I know you can do what ever is needed for Em. Best wishes!

[eye]

I have worked with gastric tubes many times.They are not that complicated. The only thing that she will mind is the tape to hold it in place. I also always made a good habit of checking to make sure it is in the stomach.I used to put just a little air in a syringe and listen to hear the gurgle sound.If I heard that then I new it was okay.Sometimes children have a habit of pulling at the tubes.Perhaps they feel she needs all the good stuff that will help her gain quicker.

You have had so much on your plate.God knows how much you can handle.I will keep you in my prayers.

[jazzieal]

Oh Wiz..Im so sorry to hear our emmy is having problems..you mentioned a g tube..Andrew has had one for years..its not a big thing to use it..its scary the first couple of times but after that its just a routine..if they decided to use one it will be because of all the vitamins and nutrients and things in the formula that will help with the problems she is having now..the formula Andrew is on is especially for children with lung problems..my thoughts and prayers are with you and if you need to talk Im always here..luv and hugs

[wolvsie35]

Anymore news Liz on our precious baby? Hope all is well in this situation...You are still in my thoughts and prayers...:D

[jazzieal]

I sure would like to hear more about out girl too Michelle..hope Wiz has time to let us know something soon..I know she has her hands full..wish she lived close to some of us then we could take turns helping her out..

[pkdoll]

Ditto!! Waiting in suspense to hear how things are going. Wiz are you and emmy ok? Praying for you daily and hoping things are ok.

[Smile]

Hello Wiz: Just thinking of you and I sure hope that Emmy is doing much better. My prayers for you both.......xoxo

[angelwithin]

any news on our little cherub yet?

[mswizard]

Sorry I've been MIA...Mark took Emmy to the doc's last week as she was having alot of trouble breathing and her doc decided to admit her after her xrays came back. We brought her home yesterday a few days earlier than they wanted but Mark had to go out of town this morning for the week and it just so happens that the kids are on mid winter break so I wouldn't have been able to be at the hospital and home at the same time.
Bad news is she hasn't gained any weight in a couple of months but the good news is..she hasn't lost any either. She has her breathing treatments, antibiotics and steroids so she should be cleared up in a few more days (I hope)

Someone needs to let me know about flowers or whatever for Jazz..God, I'm still in shock! Michelle sent me an email this am and said I probably already knew about Jazz's daughter so I had to get on to see...I wasn't expecting this...anything BUT this.

[Marion]

Liz you have sure had your hands full lately. I am glad you were able to pop on for a bit. I'm glad Emily is back home. And about the weight, Like you said at least she hasn't lost any either. Hang in there!

[jamiept]

Just read this thread, hang in there, it's always so hard when it's our children. Just know I will keep you both in my prayers!

[Granny]

Please, Wiz, take care of yourself and the little ones. Specially our little pumkin. We miss you terribly.

[pkdoll]

Glad that you are able to bring Emmy home. Please keep the faith-things will turn around. Like Marion said the good news is she hasn't lost any weight. Thinking about you all the time.

[wolvsie35]

Thanks for letting us all know....Didn't mean to bother you with the emails, but you had me and everyone else worried..<wink> Em is a fighter, that and everyone's prayers, she will pull through this...She has the best mom out there too...:D You need anything, I'm only a phone call...k? Take care of yourself, and I'm always thinking of ya...((HUGS GF!!!))

[Manatee25]

Oh poor little Emmy!!! Prayers for you both!!!!!