Feeding Tube Awareness Week 2018

Wow, it's crazy I haven't posted since early October of last year!  That's good news though :)

To finish out Feeding Tube Awareness Week, I wanted to write a post to cover some other loose ends about and related to Connor's feeding tube.

Kind of Feeding Tube
I just realized I've never discussed what kind of feeding tube Connor has.  Did you know there are different kinds?  Connor has a g-tube, which means his food goes straight into his stomach.  There are different kinds of g-tubes, but he has the AMT Mini One.

Supplies
Connor gets medical supplies shipped (to him!) every month.  We get a months worth of feeding pump bags and two connectors.  We also get a new g-tube button about every 3 months (unless one pops which has happened before).

Regrets
I've talked a lot about how much I love and appreciate Connor's feeding tube.  But I do have one regret about it: that we didn't get it sooner.  We were being pressured by several different doctors for a while about getting a feeding tube, but we were very reluctant to do it for several reasons:

• Connor enjoyed eating.  You could sense his body relax and it would calm him down.

• Getting a g-tube is surgery.  And a pretty major surgery.  Much more so than say ear tubes.  Don't get me wrong, I know that is a nerve wracking procedure for most parents, but it's also an in and out surgery.  This surgery would require a hospital stay for many days.
• Tummy time.  Connor is not able to sit up, crawl, stand, walk, etc.  His surgery was prior to him getting a wheelchair so he spent his days on the floor for the most part and he loved it (he still does).  Tummy time was HUGE for Connor and we were worried what effect having a g-tube might have on that.

I'm sure there were more concerns we had, but those were the major ones.  It took this for us to finally pull the trigger and decide he needed one:

 Getting a breathing tube put in at our pediatrician's office...crazy that Connor's breathing relied on the paramedic squeezing that bag.  I distinctly remember telling him through tears not to stop.

In the PICU

Just looking at these pictures brings back a flood of memories and a very, very scary time in our lives.  I remember talking crying to Matt on the phone in our pediatrician's office while they intubated Connor and Matt asking me if he was going to die.  It was awful.  I am getting emotional just going back to that time and it's something no parent wants to experience.

I bring this up because this is what it took.  I wish we hadn't waited for it to come to this point, but hindsight is 20/20.  The first night Connor was in the PICU we were talking to his nurse and the feeding tube came up.   I will never forget what she said about the parents she knew: "100% of parents don't regret it and most wish they had done it sooner."  She also told us that if he had had one, and had been getting the proper nutrients he needed, he likely would have never gotten that sick.  

We signed the paperwork and the surgeon even visited us while he was in the PICU to discuss it.  Connor needed to be well for the surgery to happen and it took SEVEN tries to finally get his surgery done.  The above pictures were taken in October.  Connor's surgery didn't happen until June.  It was crazy...he would get sick right around surgery time and we eventually had to quarantine him at home when I got done teaching for the school year to keep the surgery going.

*If you are interested in reading more about his surgery, I posted about it here  and here.

The Do's Don'ts of Feeding Tubes (with some of your questions answered!)

We know people are well meaning and/or curious when these comments are made, but I'm just putting it out there that they are more hurtful than we let on:

Do's:

If you are curious how it all works, ask!  We love educating people.  And if your kids are curious, that's okay.  It is different, but what a wonderful time to educate them that not everyone eats the same way.  I cringe when little kids ask their parents about Connor and they get shushed...(to be honest, if the roles were reversed I would probably be the same way so I am totally not judging anyone!). We would also love to show you how his pump works (the more people that know the better).

Offer to help if you're around.  See above!

Be supportive

Don'ts:

• When will he eat by mouth?  Probably never.  And that's okay.  We probably should be better at giving him tastes of things, but his aspiration issue is scary.
• He wants a bite of _________ or he wants to eat ________ too! (or anything else along those lines)  I assure you, he doesn't.  Connor is happy doing his Connor thing. 

If you read all of that, I am super impressed!  I've loved reading everyone's comments this week on my posts.  I think sometimes people just see the happy Connor pictures we post, but don't necessarily think of the medical things going on with him, so I've enjoyed spreading awareness during Feeding Tube Awareness Week.

Last thing:  Connor turns 5 next Saturday.  That's crazy!