Autumn's home with her new g-tube-long

[Guest guest]

Well, finally it's over. Before I go on, thanks so much for all of

your thoughts and prayers, we really needed and appreciated them. It

took a while to decide what was best for Autum was this g-tube and I

do not regret it especially with her haveing and ng put in 1.5 weeks

before because she just woldn't eat or drink yet again. Also, I

don't know if I mentioned, she is 16 lbs and just between 29 3/4 and

30 inches now and 21.5 mos old. At 1 yr she weighed 15 lbs 11 oz

and was hanging in there on teh larger side of RSS, then it just

stopped and she gained a little, lost a little, then she yo-yoed and

got more and more unhealthy, always sick, didn't eat/drink until here

we are today almost a year later. SHe got her g-tube placed on

monday and the first 24 hours were horrible. She was in a lot of

pain and wouldn't move and when we shifted her she would cry. We

couldn't put her down the first night in her crib because she was so

upset so the nurse said if we sign a waiver (she is under 3 and needs

a crib according to hospital policy) they would remove the crib and

bring in a hospital bed for me to lay in with her, so finally we got

it all worked out and my husband and I could rest, it was almost 2 am

by then and the docs were going to round at 5! She was in a lot of

pain that night and I actually had to push the nurse for more than

tylenol, but finally we got a doctors order for something stronger

and Autumn calmed down and felt much better. I thought her pain

would never go away, she wouldn't even move on her own, then the next

night she suddenly was up, running around, laughing, climbing,

playing and we couldn't believe it! She is sore but otherwise doing

amazingly well! It was just those first 24 hours that were the

worst. We came home tuesday night and she just perked up being out

of the hospital. She also is tolerating feeds very well. WE do 4 oz

bolus 5 times a day and she even helps to hold the syringe for the

gravity feeds, she calls it her baba. So far so good. She is only

on 600 cals a day and they want at least 1000 but in no way is she

taking the near 400 extra needed by mouth. If you could believe it,

the docs had no idea what was going on with her feeds the morning

after surgery when they were about to begin. The nurse was frustrated

becasue they had changed the orders (plans) 3 times that morning and

she didn't know what was up. The docs first wanted a 2 oz bolus,

then 2 hours later 4 oz then 2 more hours later 6 oz! I said no

way! That is 12 oz in 4-5 hours! She is only 16 lbs! Then they

tried to only do pump feeding and wanted us home on continuous pumps

and I said what are they talking about, that was not the plan ever,

then finally they got hold of the nutritionist that spent 15 minutes

with me the night before designing a plan for Autumn and it got taken

care of. I will not go into detail, but this stay was another total

negative experience. My mother in law stayed with me one day and

couldn't believe it once she saw it for herself just how horrible and

confused these doctors and nurses were, no one knew what was going

on, no communication,it's amazing how many times i heard, " hmm, I

don't know " .

Anyways, at least we are home and she is doing well. The one problem

though is that originally we were doing this for supplimental feeds

at night, like 2 boluses or so of a couple hundred extra calories.

Now, she is solely bolused and food is extra calories. The gi

doctor's nurse is no help now and they are the ones who referred us

to the surgeon with a plan. she just said she'll see me in about a

week and we'll see then said she didn't even know why Autumn was on

peptamen jr and we need to change that because if it was working she

would have gained weight by now?!? I said it would have worked if

she actually would have taken enough!!!!!!!! Plus, she has been on it

for 10 or so months and they never had a problem with it before! OK,

I could go on and on but I am so frustrated with this lack of

communication with these docs I am about to lose it. Also, the

problem is now that Autumn stopped eating a couple weeks ago and got

an ng tube after a little and still doesn't eat much or drink much of

anything. She used to be an 'eater', not enough for good weight

gain, but she ate, now she barely wants to and when she does, I don't

want it messed up by her bolus feeds. I know she just had surgery

but she has done this for a while, and if she gets sick again or

doesnt' pick up her appetite, will she never solely eat food with

bolus feeds on the side? Will it be mainly tube feeding? because

this constant bolus feeds on top of nursing my baby and my other 2

kids are taking up every waking second. Am I making sense to you?

AHHH. I am done. Thanks for listening.

mom to Autumn 21.5 mos, Summer 4 mos, Ocean 3 yrs, Skye 7 yrs