G-Tube, need some help.

[anonymous]

Jenn - Me again --

I just went back and read your other messages. Boy, your kids are adorable.

I didnt realize he was so little. When Tara was a baby, days old, we would put the enzymes in a baby size spoon with enzymes and wash it done with a bit of formula. You could try this right before he goes to sleep and then hook up the feed.

Talk to the dr about the reflux they should be able to prescribe something to calm it down.

deb (momof Tara & Tina wcf) Thomas w/o

 

[anonymous]

Deb,
You make a lot of since, but it's really hard for me to adapt right now. It just feels like nothing works and I'm a little overwhelmed with it all. I'm also just really worried about him. He has cerebral palsy as well as CF which makes this very difficult. I went from a working woman with a great career in law enforcement to a stay at home mom/nurse. I have no social life anymore and I spend so much time here in this house that I could do jail time. So, going from a very enthusiastic career woman to a stay at home mom trying to figure out how to make enzymes to go through a feeding tube sometimes makes me want to scream. And doctors really get on my nerves sometimes, they don't always let you know a lot of diffierent techniques and stuff that I guess only parents or patients know about.
Jen

 

[HD]

What I tell my patient's when they ask about where there newborn should sleep is where ever every one gets the most sleep. In their crib, in the parents bed, strapped to the ceiling fan on high, if everyone is sleeping that's where it should be! That's why we are going to have Ian in our bed at first. He is used to having acess to it for one thing and I don't want him to think it's a punishment that he can't come into be with us. Also it's going to take us a while to work out timeing and get used to the Kangaroo pump again and so if I just have to sit up rather than get up I'm going to do it.

Jenn, when Ian had his NG tube we did not give him enzymes and he gained. You might want to give it a try if he so far has a decent growth curve going. I do understand somewhat where you are comng from. Kara was three and Ian 6 months old when he was diagnosed. He was so sick I ended being a stay at home mom for a year and a half, some thing I never in a million trilion years wanted to do. I loved my career and job shared. It was not easy and in all honesty I never bonded with the stay at home mom role. God just did not make me that way. I did it becasue monitarily my husband made more money than I did and Ian needed a stay at home parent. I hated my life for quite awhile. Are you able to get out for counseling or have you talked to your primary provider about depression? Meds did help me cope. I went back to work part time when Ian was 3.

One more question as I watched Ian careening around the museum the other day. Any tips for securing the G Tube? I know he is supposed to have limited activity for a few weeks (I'm considering tranqulizers<img src="i/expressions/face-icon-small-wink.gif" border="0">) but even after I'm going to need to secure it VERY well unitl he is able to get a button port.

 

[anonymous]

Jenn--

I just feel so bad. As if CF wasnt bad enough to have to deal with, my goodness, God expects alot from us sometimes, doesnt he??

Oh, yes, the meds, you should definitely talk to someone about getting something to help you with depression. I forgot to add that in my other note. I have calmed down alot since I went on something.

I, too, had a great job in the city, etc. I wish I could be a stay at home mom. Instead, I need to work so I work the night shift - full time in the police dept. Is that what you did? Talk about being tired. But, again it does get easier with the sleeping as they get older. When I first started this job, my work friends would tease me and say "dont worry Deb only 5 more years until you can sleep" and believe me I am making up for it now!!! LOL!!! Good Luck - Deb (mom of three)

 

[anonymous]

we also have had the g tube for a few years and were told the enzymes werent necessary witht he feedings...we do them overnight..we also use the Vital HN, maybe the kind of formula used determines whether enzymes are needed