How Do You Feel About This?

TommysMommy · #1 07-08-2007, 02:10 AM

Ok, long story short, our central air is broken and the two window units we are running in our mobile home are just not cooling it down. It is running around 97 in here during the day. I keep a fan on Tommy all the time and that helps, but this can't be good for him.

We have gone through all of the typical channels here to get assistance, but bottom line is there is just no funding anywhere. Our local "cool breeze" program actually did give us the second window unit, but is only 5000 BTUs (the little tiny one at Walmart for $89). A couple of friends are working on trying to find someone to fix it for free, but we arent sure if that will pan out.

It has been suggested to me that I should write out Tommy's "story", and contact the local media to do a news story on him. Sure I want the help, and we definetly need this fixed, but is this the way? Has anyone else reached out to the media to get something for your child? What were the results? For some reason, I get the feeling seeing us on TV for that reason is like seeing one of those Sally Struthers "feed the children" commercials.

I know his health is at risk here, and I just don't know any other way. Why do I feel like I will be using Tommy? Maybe I have a hard time accepting help, I just don't know....

Thoughts?

Shylent · #2 07-08-2007, 03:44 AM

This may just be me but if I was in your place I would hire a skywriter to share the info if I needed to ! In other words I would write every single local media outlet if it got Tommy what he needed.

It's not like you are asking for a pool , new TV or something frivolous, this is something your son needs to thrive.
Would you ever look down on someone who was caught in a bind and needed a little extra help for once ? I doubt it . I say go for it and down the road , once things settle down do something good for someone else to 'even it out' if you need to justify it for yourself.

Good luck !

aydens mom · #3 07-08-2007, 07:05 AM

If it were me,I would do whatever i had to for Ayden,there would be no way Ayden could handle that heat,he can barely breath when its in the high 80s outside,let alone in the house!!

Lifeisgood · #4 07-08-2007, 07:26 AM

Rene,

I have been thinking about you and Tommy. When Harlie overheats it's terrible. So, I agree - you do what you have to do. There are people out there that want to make a difference. So, I say go for it! (plus - it gives you a chance to spark awareness on CHD and our special children!

)

Let us know what happens. Hang in there!

Christy

Mom2TwinsPlus1 · #5 07-08-2007, 09:24 AM

I agree you should do what you need too, in that situation Emma would be having seizures left and right. But I wonder about going to the media. I had a friend who did that in the town she grew up in. She has a son who has epilepsy, and a cardiac condition and it was almost the same situation but with heat and not cold air. They put it on the news, they ended up getting some help which was good in the long run, but child protective services also investiaged them and threatend to take their son. Stating they could not afford basic care needs etc, they opened a complaint and started digging around in his medical issues too trying to see if any where her fault. IN the end they did drop the case, seeing that she had attempted to get help from agencies in getting heating but it was a scary few months for their family.

Now not all child services places are like that, I mean they can see you are making an attempt to get help and that is all that matters, I didn't write all that to scare you or talk you out of it, but just wanted you to hear something that COULD happen, it might very well not happen either.

Do you belong to a church? Have you asked them? I know sometimes churches pull together to help in things like this, or ask your doctor's office even maybe they have some ideas on help. You did say you had gone through all the channels so I am sure you have thought of that already.

cbissell · #6 07-08-2007, 09:38 AM

From a tracheostomy perspective, it's good that you live in SC. Although it is hot, it's a humid heat, which is much better for kids with trachs than if you lived in say AZ where the heat is very dry.

LeslieML · #7 07-08-2007, 08:14 PM

I agree with Cindy about the humid heat.
After Hurricane Ivan we went w/out power for almost a month. It's a blur.
Yeah we had a generator but no central a/c!!
Chase was still vented 24/7. We took alot of walks to the Walmart and sat in there during the dog heat portions of the day.
Whatever you decided to do I hope it works out!

Jordansmom · #8 07-08-2007, 08:36 PM

Our home also runs on 2 window units. Before we got the second unit we only had the one & I put it in my room, closed the door & basically stayed in there until we could resolve the problem(all of us). When we could afford the second unit, It helped cool the house but bedrooms still get warm. Needless to say our kitchen & Jordan's room has the a/c. I don't know where yours are placed, but closing off 1 room w/a/c could at least give you a cooling room until help arrives. Go to freecycle.org register for your town & explain the situation, if you either need another unit or central ac fixed someone may be able to help. When you register & post for your town it's all local people & they are helpful, I have seen a/c units on there for people in need. Good luck
I hope you can find some help,
Also, if you are on the waiver program, call your coordinator & ask for what you need for your child.
Cathy

WeAdoptKids · #9 07-08-2007, 08:38 PM

Lori pointed out something that does happen. It has happened to two families here over things that were simular in nature. However, our community reaches out to us at the strangest times with the strangest things. It may be that our children are adopted and social services knows all about them and we are very involved with all that they do....who knows.

The church is a great idea, also any of the service organizations in your area. I would start there and give them a call. Many are willing to reach out once they know of a need.

Good luck and keep us posted n what you chose to do,
Hugs,
Roberta

Becky · #10 07-08-2007, 09:18 PM

What about having your doctor write a letter of neccessity, along with a prescription for the a/c. Have it saying your son needs a/c for health reasons. Have the doctor give a detailed explanation of your sons health problems, why he needs the a/c and what happens when he doesn't have it. And that you need it fixed asap then see if the insurance company will pay for the repairs? I bring this up because when I was child my parents got a/c for our house and our medical insurance paid a portion of the cost. I don't remember how much they covered, I think it was about half of the price. I needed it because of health reasons, too. I can't breathe well when its hot and humid, and I overheat pretty easy so my doctor wrote a letter of neccessity and a prescription for a/c. So I would look into seeing if your medical insurance would pay for a portion of the cost of the repairs or maybe the whole amount. I mean, it would be cheaper for them to pay for the repairs then to pay the cost of a hospital stay!

Becky