Thursday, May 31, 2012

People have no tact

Yes my baby has a feeding tube, but that's not all of who he is. he's a very happy smiley baby whose smile gets bigger every time you play with his arms. Who already appears to have hay fever poor guy! But yes it is the dominant thing you see on him and it does take up a lot of time maintaining,feeding, avoid tripping on and rushing to the hospital with each clog with fear that he will not be getting enough nutrition for the day.

Now for some people the tube can seem really scary and there is no way they are going to hold him not until its gone! Which is fine, but I've held him with much much more tubes on him then what he has now this one tube doesn't bother me in that way, now I ma careful. I certainly do not want it pulling out! Which I already did once :/ not fun. I am worried abut all of these trips to the hospital about all of the x-rays we have to put him through in order for him to be able to eat. we had to go back on Monday because it clogged again!!!!!!!

There are a few things I am tired of hearing... OK one in particular: When is he getting off of the feeding tube? We have no idea ok? Stop asking if something changes you'll hear about it and asking every few days does not mean he is magically going to be off of it. My bets answer: when he's ready! we can't push him. The other thing getting on my nerves is the complete ignorance and lack of tact of some people. One person told me that he was lazy since he did not take the bottle. Lazy really? Do you have any idea what he's been through and how little he was able to feed on a bottle before we were finally okayed to give him one??? No? Then shut it! Lazy is not a term I would give to a 2 month old baby that had open heart surgery 7 days after he was born.

I found a website the other day that made me fell much about about what we are going through with Aiden we aren't alone and I knew that but it was nice reading about it the link is here: Feeding tube awarness foundation There was one paragraph in particular that hit a lot of what I've been growing through:

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn't have to see. Many of us shouldn't have seen our kids intubated and connected to so many wires you aren't sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons.

The reason I feel so strongly about this line is all that they list we went through.  The intubation, anesthesia, barium, countless x-rays medications (13, 000 dollars worth while in the hospital) and yes I handed him over to a surgeon as well.  It can and will change you and exhaust, stress and at times bring you to your wits end.

 Our goals right now are a lot smaller then getting him fully off of the tube that will take time lets get through each step before we look at the end result shall we? he is now taking the bottle occasionally and has drank a little. Once he starts to drink more I'll make an appointment for his next swallow test, but not until then. I'm not putting him through more radiation until he can readily drink from a bottle. Why put him through that when part of what he needs to do to pass is that?  Now I of course do hope he can start drinking more soon and fast but its all up to him and well his NJ tube as well. Every time it clogs and has to be replaced he starts spitting up stomach acid and he really doesn't want anything near his mouth after that it takes some time to get him back to where he was just hours before.

And a side note I'm not sure how I survived but I went to the store with both boys! I needed little A's medicine and Daddy had to work late so we all went to the store. thankfully I found an open parking spot next to a cart return which had a cart in it. without that it would have been really hard to accomplish!


Telisha Garris said...

I'm sorry (and proud of your shopping trip).
I just wish that your life was easier.
I also wish that you didn't have so many issues with the feeding tube - forget the snarky comments, the endless when will he be off it questions, I just wish that it was over so that you wouldn't have to run back and forth paying out endless co-pays, stress and long hours at primary's.

Heather said...

Well what I'm not over-ally happy with is the fact that people in radiology recognizes us. Seriously there like I remember you! No I don't want to x-ray technicians knowing us that well. Also monday learned that sometimes the feeding tube when there trying to feed it down past his tummy it can recoil and come back up and have the need sticking out of his mouth... so not a good moment.

Ali said...

I love that paragraph! Thank you so much for finding that and sharing. I can totally relate.
I am so sorry with all the issues you are having with the feeding tube. Tanner never came home on a feeding tube or O2, so I can't even imagine what you are going through.
But it sounds like to me that you are being one strong momma and knowing what is best for your little hero.
You are amazing and so inspiring. Please remember that and to those people that don't, and will never understand... tell them to shove it and just ignore their ignorance!
<3 hugs!

Jo who can't think of a clever nickname said...

You just have to laugh about the ignorant people unfortunately.
I had a friend suggest that my non-verbal 3 year old might "just be lazy", No, it's called ASD actually! And he works twice as hard as a Neuro-typical child to make sense of the world around him.

If it's any consolation Aiden will have some great stories to tell when he grows up when the other boys are boasting about their scars and wounds!