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Spending only five days at home after a four and half weeks in children hospital we had to put my son back in.We are looking at posibsible another four or five week stay .We thought he was getting better.Well this is what sucks in my life.I know things will get better sooner or later it just stinks haveing to see him go threw all of this.

So feel free to write about what sucks in your life or just in general. :banghead::banghead::banghead:

 

 

PS i know this is a downer of a topic but some times it just makes you feel better puting it in writing.

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Real sorry to hear this car dude. News like this completely sinks my heart. What's your boy's name? I'd like to remember him and your family in my Prayers.

 

+100

 

You can't just come on here and tell us that much man! Please a tad more info so as we can understand your pain brother!?

 

Chris

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Thanks guys his name is ethan he is 14 and has CP ( cerebal palsy) he is comppletey dependent on us for every thing. He is in a wheel chair and can not sit or stand buy his self. But his cognitive level is on par with his age. He goes to school and in general is a very happy boy.But back in june of last year he started with some GI issues.His esophagus stop working.He was haveing severe reflux. Because he is not verbal he could not tell us that it was burning,so his esophagus started to eroded. and due to the reflux and his esophagus not allowing the fluid to go back down he keeps getting aspiration pneumonia . He has had three surgerys to try and fix every thing.But after only five days of being home he has pneumonia again.

 

 

Thank for lislistening

Robert

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Robert...I feel for you, Ethan, and your wife my man.

 

I just moved back to the US from Canada in January. In my two year stint in Canada, I strayed from my business of selling bicycles and chased another passion that I've always had in social work. I worked with adults with Autism, Down, CP and Ahlzheimers. Your description of Ethan fits one of my students to a tee. Only difference is he was 22 yo and spoke a bit. He was one of the most rewarding people I've ever had the chance to meet! On a regular basis he filled my heart with things that people without special needs could not possibly have in store! I really miss him!

 

I am sure that Ethan is just as fulfilling in your lives. It was very hard for me to fathom being the parent of a special needs child. However, I was very encouraged as I joined the team at our day school there in the Toronto area, to see that there are as many people as there are that have followed this path in life to help folks with these challenges. I fully intend on getting back into it here in NJ. very soon. We are in the middle of finding a new home, and I want to figure out where we are going to live before I venture out into the arena again.

 

I will continue to have you and Ethan in my thoughts, and check in on you from time to time. Till then, know that you and your family are NOT ALONE on this journey!

 

Keep the faith bud!

 

Chris

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Thanks guys his name is ethan he is 14 and has CP ( cerebal palsy) he is comppletey dependent on us for every thing. He is in a wheel chair and can not sit or stand buy his self. But his cognitive level is on par with his age. He goes to school and in general is a very happy boy.But back in june of last year he started with some GI issues.His esophagus stop working.He was haveing severe reflux. Because he is not verbal he could not tell us that it was burning,so his esophagus started to eroded. and due to the reflux and his esophagus not allowing the fluid to go back down he keeps getting aspiration pneumonia . He has had three surgerys to try and fix every thing.But after only five days of being home he has pneumonia again.

 

 

Thank for lislistening

Robert

 

 

Robert,

 

My daughter Lindsey has spina bifida and is confined to a wheel chair, she has problems with seizures and a host of other serious medical issues. I know how you feel, Barbie and I have been taking care of her for 28 years. Two years ago we went in the hospital for a routine test, she aspirated on a meal, and we had to be transferred to a major medical university hospital and we spent 41 days at UAMS in Little Rock, AR in ICU and she coded one time. We were told they needed to do a trake tube so she could breath on her own.

 

We said no and through the power of prayer and a wonderful pulmonary doctor named Mireless, who we believed saved her life, was able with great staff to allow her to heal and eventually breath on her own. He sent her home with only a feeding tube in her nose after 41 days. We tube feed her four more weeks and the tube is gone and she is breathing on her own.

 

Don't give up my friend and enjoy every minute with your child. I don't know why the good Lord lets these things happen in life, and many people ask me how we deal with this, you do it because you have no choice. Venting is normal and helps you cope.

 

My e-mail is ggreenwell52@gmail.com trust me I know what you are going through. There will be better days ahead. When you need to just vent drop me a line and tell me how things are going. In my wife and my thoughts.

 

GG

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Robert...I feel for you, Ethan, and your wife my man.

 

I just moved back to the US from Canada in January. In my two year stint in Canada, I strayed from my business of selling bicycles and chased another passion that I've always had in social work. I worked with adults with Autism, Down, CP and Ahlzheimers. Your description of Ethan fits one of my students to a tee. Only difference is he was 22 yo and spoke a bit. He was one of the most rewarding people I've ever had the chance to meet! On a regular basis he filled my heart with things that people without special needs could not possibly have in store! I really miss him!

 

I am sure that Ethan is just as fulfilling in your lives. It was very hard for me to fathom being the parent of a special needs child. However, I was very encouraged as I joined the team at our day school there in the Toronto area, to see that there are as many people as there are that have followed this path in life to help folks with these challenges. I fully intend on getting back into it here in NJ. very soon. We are in the middle of finding a new home, and I want to figure out where we are going to live before I venture out into the arena again.

 

I will continue to have you and Ethan in my thoughts, and check in on you from time to time. Till then, know that you and your family are NOT ALONE on this journey!

 

Keep the faith bud!

 

Chris

 

Chris thanks for the kind words and a big thanks for giveing your time to help out the disabled.That is a big one most people can not handle it.But when you realize you dont need to change the way they are(because you can not) you can only give them what ever they need to keep them happy.It makes it a lot easier.

 

 

Thank you

Robert

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Chris thanks for the kind words and a big thanks for giveing your time to help out the disabled.That is a big one most people can not handle it.But when you realize you dont need to change the way they are(because you can not) you can only give them what ever they need to keep them happy.It makes it a lot easier.

 

 

Thank you

Robert

 

:)

 

I tried to give my students two things: Hugs and Respect! I found that they don't get enuf of either from most of the people in their lives. After all, those are two things we ALL need!

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Robert I hope everything works out for your son & hope for better days to come. Good Luck

 

 

Chris it takes a special person to do what you do for other people hope you get back at because there are people out there that need you.

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Spending only five days at home after a four and half weeks in children hospital we had to put my son back in.We are looking at posibsible another four or five week stay .We thought he was getting better.Well this is what sucks in my life.I know things will get better sooner or later it just stinks haveing to see him go threw all of this.

So feel free to write about what sucks in your life or just in general. :banghead::banghead::banghead:

 

 

PS i know this is a downer of a topic but some times it just makes you feel better puting it in writing.

 

 

Sorry to hear this bud you can scream in my ear anytime !! If you need anything feel free to ask

 

Good luck

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No problem letting off steam sometimes. I'm very sorry for both (car dude & tapd) your kids illnesses and your grief as good parents. You all are in my prayers.

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I am so sorry read your stories. Let's hope and pray things turn around for you. Don't ever worry or apologize for coming to TS with your problems. We are family and need each other at various times. I am on the mend from prostate cancer surgery in January. The thoughts and prayers I received from TS really helped me get thru my ordeal then and still do.

 

We had a son in the hospital years ago for over 7 weeks and know what a roller coaster of emotions you go thru. Feel free to let it all out there. Best of luck to your families. :salute:

 

Erik

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I hope everything works out for you. My oldest son has health problems (on kidney transplant list) and it can be difficult with all the stress involved but we have to stay strong for them and ask in pray for the strength to help them, others, and ourselves out.

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Just a little update.Ethan had a central line put in today. All went well.Now they can start feeding him and not have to worry about him aspirateing and getting pneumonia.

This puts him on the road to healing.We need to wait two or three weeks before they can try and fix his esophgus.

It really ment a lot to read all of your kind words and prayers,and the TS members that have a child with special needs thanks for shairing your stories.

Again Thank you Thank you

Robert

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Just a little update.Ethan had a central line put in today. All went well.Now they can start feeding him and not have to worry about him aspirateing and getting pneumonia.

This puts him on the road to healing.We need to wait two or three weeks before they can try and fix his esophgus.

It really ment a lot to read all of your kind words and prayers,and the TS members that have a child with special needs thanks for shairing your stories.

Again Thank you Thank you

Robert

 

Great news Robert!

 

Prayer works.

 

BB

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Just a little update.Ethan had a central line put in today. All went well.Now they can start feeding him and not have to worry about him aspirateing and getting pneumonia.

This puts him on the road to healing.We need to wait two or three weeks before they can try and fix his esophgus.

It really ment a lot to read all of your kind words and prayers,and the TS members that have a child with special needs thanks for shairing your stories.

Again Thank you Thank you

Robert

 

 

Robert, Prayers you way my friend!

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