Start over.....

I just finished writing a real long blog post about how tired I am with the whole feeding tube situation and not being able to get a diagnosis for Allie. It was a pity party for myself and after reading it then re-reading it and reading it again, I decided to not post it.  I know the families out there that have a tube fed child understand the daily struggles we face but sometimes I just want others to understand it too.  I don't want people to feel sorry for us - there is nothing to feel sorry for.  We have a great life and 2 beautiful children that are wonderful.  I wouldn't change anything about my life (except maybe the fact that we had a babysitter - lol).  In many ways I feel blessed that Allie has a feeding tube.  For starters it's keeping her alive everyday but also for the fact that I have become so knowledgeable about many medical issues and I feel educated enough on Allie's medical needs to stand up for what is right for her. I have learnt how to stand up and voice my opinion and not back down.  I have become a much stronger person since Allie came into this world.

The following information comes from the website http://www.feedingtubeawareness.com/.  This is a wonderful website that provides endless information about children with feeding tubes.  The information on the site is all provided by parents of tube fed children - it's real and not something out of a text book.  This is by far my favorite site!  There is a section on the site called "family" - here is some of what you will find there...........I know it's long but it's worth reading!

Dear Friends and Family, 

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do. 

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony, is that many tubie kids do not look sick. Check out the bios of our tubie kids! However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy. 

Here are some things we would like you to know: 

If we are going out we need to plan in advance

We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans. 

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can't be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Wait staff may even take it upon themselves to bring your child crackers (this happened to me and the we had to go through a lengthy explanation of why our child couldn't eat). 

We are tired

There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren't always the best sleepers. Some vomit in the middle of the night. We investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream. 

We can also be emotionally drained

It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. I am not sure my own family understood how stressful this was for me. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong. 

We don't expect sympathy or necessarily want sympathy from you

We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don't particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job. 

It may seem silly to you, but it might be cause for celebration for us if our kids eats even a small amount

A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

Some of our kids are on SSI or Medicaid. It is because any child on a feeding tube is legally disabled and they are entitled to certain services. Please don't think we are milking the system or are lazy. 

Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them. If our insurance plan did not cover my son's formula (which is amino acid, elemental and hypoallergenic). It would be upwards of $700 a month. On top of that there are copays for doctors, tests, other medical supplies. Som medical supplies aren't covered by insurance at all. Moreover, many tubie families have to have at least one parent who is home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight. 

I am so happy I spared you from my pity party and decided to post the above instead.  Thank you for following Allie's story and for the endless prayers we have been receiving.  Allie meets with her ENT and GI doctor next week so please continue to pray they have suggestions or further testing in mind that might lead us to a diagnosis for little Allie.

Here are a couple pictures taken by Jim Bovin for the Ronald McDonald House in Milwaukee. Enjoy.....

The Berndt's - July 2010

Protected by daddy's hand

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