Wednesday, July 14, 2010
the dreaded GTube
The decision has been talked about forever, actually when Luke was much younger our old Gastro was ready to put one in. I took him to a new doctor cause I was concerned they hadn't done enough to find out what was wrong with him. The recent decision has been extremely difficult and especially on Dad. I could name the reasons I think Dad doesn't want it like he is afraid he may get infected, he might pull it out all things he tells me . But I can't help but think does he feel that this thing on him makes him appear even more difficult. Maybe I'm wrong but I just get the sense that this is another thing that when he looks at his boy screams I am different. Although he says he is fine with everything some days I think he copes very differently. Maybe I am off base here but we have been together since he was 17 and I think this is hard for him. His issues with weight gain, a bad swallow, a stomach still not healing even on his gluten free diet, high IGG levels, all play a part to reasons why the tube is being placed. The allergist wants to try a milk free diet but is worried about what he would eat and how he may lose even more weight. So the tube is going to be placed first and then he will be fed a gluten and milk free supplement and given foods that are safe for him to see if his stomach will heal. Hopefully he will start absorbing the Zinc and Iron that his body is severely lacking and his IGg levels will fall. The last 2 weeks he wasn't feeling well and alot causing me to have to force food and liquid on him every time he was awake. Something Dad is lucky enough to be at work and not have to experience. If he could only spend as much time with him as I do and see how some days it pains him to eat. As much as he doesn't want this and I didn't either I can't help but to be excited that when he isn't feeling well enough to eat I won't have to force him to so he doesn't dehydrate. I know it sounds selfish and the tube may not change anything but I pray that it turns out to be a decision I regret I didn't do sooner! Odd think to hope for I know but the alternative is worse!
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Jackie~
ReplyDeleteMy heart aches for you & your family. It's not an easy decision, I once took a class regarding vision impairment in cleveland. There was a woman there with her daughter that was pretty involved, so much I related with her & her daughter. Tristan does not have a g-tube, yet, he tends to hold his own at the 3% on the chart (no huge jumps). Anyway, Avery, was her daughter's name. She said believe it or not the Tube was a blessing...it made feedings less dramatic. When the family sat down to eat, Avery still sat with the family and was given a snack and tube fed at different times. This enabled the mom to feel like she was doing something other than feeding her daughter. I'm at home now with Tristan, we do have days where it feels like all we do is feed. He eats pureed foods. The g-tube doesn't make you any less a parent. Your both parents trying to look out for your child, who could possibly ask for more?
As for your husband, your correct, he does take things different from the way you or I would. My husband did too. When Tristan was in NICU, one of the nurses said something that stuck with me...Dads & Grandpas have the hardest time with NICU and these special kids. Why? Because they like to fix things, that's their calling, yet there is nothing they can fix with these precious kids. Try as we might, we really can't "fix" our kids, we just try to make things more comfortable and as easy as possible for our kids. Sometimes we have to push them along too. My husband works at walmart, mostly the 2:00-11 p.m. shift. So we don't see each other for long or even talk. We don't have sitters, my in-laws are different (not at all interested in sitting or what really is going on w/tristan) my dad works 7 days a week trying to help us financially, my mom's back has been bothering her for a long time so she can't lift him (36 pounds is a lot of dead weight it never fails your trying to hold him one way & he's pulling another with his muscle tone). It's hard, our house isn't appropriate, but when we moved here 14 years ago, this was not anywhere on the horizon. You don't have to be superwoman! Ask for help when you need it. Take a break when you need it. If anyone ask if things are going ok, dump on them. if you say it's alright, they think you have a grip...hey maybe you do at that moment...so add the disclaimer..."for now" all is going well. I often think we should own our own waiting area just because we spend so much time at ACH...one with comfy chairs and footstools. Anyway, hang in there! I'm here if you need me!