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Thank you Amanda, I know you would have been there if you could.I also appreciate all of the postings from your parents and Lauren. It means a lot to us. Most of all, I need to make sure ya'll understand that my mom is hurting just as much as me and needs all of the love and support that your family can offer her.

Crystal, I'm glad reading this thread helps you, even if just a little. :wub:

Prayers for comfort for all of you!!!!

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:wub:

 

You don't know me, but I have been where you are. My sweet baby boy would be 16 now. Don't rush yourself to do all of those things. There is no timetable. Don't expect the road to be easy, but you will make it, for him. I wish I could share something magical that would make it all better. It's okay to be angry, even angry with God. But do know He grieves with you. It's okay to ask why, though I doubt you'll ever have a real answer. God bless you. I know how hard it is.

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Thank you so much for allowing me to share. I pray for strength for you and your family.

 

Please do share this with your family. I want everyone to know about this problem and about the doctors who seem to just want your money and dont want to bother checking out other possibilities that are out there. Our pediatrician never even mentioned the possibility of something more than a common cold and sinus infection. NO breathing treatments, no xrays (which would have shown the hole in his lungs), no test of his oxygen intake....NOTHING!!! Remember to always hug your children every day and tell them how much you love them because I can no longer do that and it breaks my heart every day ...(still crying) :( .

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Crystal-

 

You, James, your Mom and whole family have been in my prayers since I got the first call last week.. ( I didn't know you were on here- I haven't been on in a while!). I know this past week has been the hardest for you guys...The service was beautiful though and the songs were perfect. I do know that you will see James again, and you will all be together one day. Until then you have a new angel watching over you guys.

 

I heard a line in a song I was listening to the other day and I thought of you. It said : " Heaven hears her heart before she cries..." I know Heavenly Father knows your heart is broken right now and is there to help you heal. The pain will never fully go away, but it will get easier. Heather and her husband know what it is like to lose a child.. ( I know she wanted to be there- but it brought it back especially because James and Will are buried in the same place...) But I know if you ever need to talk , she would be there for you too...

 

I am glad you can get some comfort on here... please know we are thinking of you and praying for you,and let us know if you NEED ANYTHING!!

 

Love, Jen

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Well the funeral was today and I have finally gotten thru most of the worst of everything.Thanks to all of you who came.Clark funeral home was packed and everybody who went to the funeral also went to the burial which meant so much to me and James.We are now both sitting here in our living room looking around at everything we still have left to do (clean his room, donate his things, organize what we are going to keep,call insurance company etc...). The first thing I wanted to do was to get on here and thank all of you as well as Clark Funeral Home. They are the best people to deal with when you have a situation like this and I would not have wanted to deal with anyone else. They let me do whatever I wanted to do when it came to the Funeral and even went to the local pharmacy to get me medicine when I started getting sick. They will never know how much they mean to us. All of you are wonderful and I hope each of you understand what a special child I had who is now looking down on me smiling. :rolleyes: :rolleyes: :rolleyes: :rolleyes:

I COULD NOT JUST PUT THE BABY THINGS AWAY...IT TOOK ME SEVERAL WEEKS TO SORT AND PUT THINGS AWAY ...I SAT IN THE FLOOR OF THE NURSERY AND CRIED AND PUT SOMETHING IN THE BOX AND CRIED AND PUT SOMETHING ELSE IN THE BOX...I HAD SEVERAL OFFERS TO CLEAR HER ROOM BUT I NEEDED TO DO IT MYSELF...IT WAS PART OF MY GRIEVING PROCESS... IT HAS BEEN MANY YEARS ....I DEALT WITH IT BUT KEPT A LOT BOTTLED IN ....I HAD SEVERAL FRIENDS THAT HAD SIMILAR THINGS HAPPEN AND THEY HELPED A LOT , BUT I DO WISH I HAD WENT TO A SUPPORT GROUP, WHEN THEY SAY " I KNOW WHAT YOU ARE FEELING"

THEY REALLY DO AND MAYBE THEY CAN SAY OR DO SOMETHING THAT WILL HELP ....PRAYERS FOR PEACE FOR YOUR FAMILY

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Crystal-

 

You, James, your Mom and whole family have been in my prayers since I got the first call last week.. ( I didn't know you were on here- I haven't been on in a while!). I know this past week has been the hardest for you guys...The service was beautiful though and the songs were perfect. I do know that you will see James again, and you will all be together one day. Until then you have a new angel watching over you guys.

 

I heard a line in a song I was listening to the other day and I thought of you. It said : " Heaven hears her heart before she cries..." I know Heavenly Father knows your heart is broken right now and is there to help you heal. The pain will never fully go away, but it will get easier. Heather and her husband know what it is like to lose a child.. ( I know she wanted to be there- but it brought it back especially because James and Will are buried in the same place...) But I know if you ever need to talk , she would be there for you too...

 

I am glad you can get some comfort on here... please know we are thinking of you and praying for you,and let us know if you NEED ANYTHING!!

 

Love, Jen

 

I had no idea you were on here either. I appreciate all of your support and I cant blame Heather for not coming. James and I have been talking a lot lately and actually feel closer to each other since this happened. I have a few weeks off before we go back to work so I know that we will get better together.Thanks again for all the prayers and keep my mom in mind too. She is still taking it very hard since James used to stay with her daily.

 

I COULD NOT JUST PUT THE BABY THINGS AWAY...IT TOOK ME SEVERAL WEEKS TO SORT AND PUT THINGS AWAY ...I SAT IN THE FLOOR OF THE NURSERY AND CRIED AND PUT SOMETHING IN THE BOX AND CRIED AND PUT SOMETHING ELSE IN THE BOX...I HAD SEVERAL OFFERS TO CLEAR HER ROOM BUT I NEEDED TO DO IT MYSELF...IT WAS PART OF MY GRIEVING PROCESS... IT HAS BEEN MANY YEARS ....I DEALT WITH IT BUT KEPT A LOT BOTTLED IN ....I HAD SEVERAL FRIENDS THAT HAD SIMILAR THINGS HAPPEN AND THEY HELPED A LOT , BUT I DO WISH I HAD WENT TO A SUPPORT GROUP, WHEN THEY SAY " I KNOW WHAT YOU ARE FEELING"

THEY REALLY DO AND MAYBE THEY CAN SAY OR DO SOMETHING THAT WILL HELP ....PRAYERS FOR PEACE FOR YOUR FAMILY

 

Yes, we still have not even tackled the room.To be honest,I dont know when I will but it will not be anytime soon. We have just kind of closed the room off and I will tackled that obstacle when I have to. We have been talking about going to a support counselor but right now there just hasnt been any time to do anything. We have a very large support system that are getting us through it right now.

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Your family has been in prayers ever since Ramah told me about him going to the hospital. I can't imagine how you feel, but live your life for him and in honor of him.

Did the doctors ever decide what was wrong?

James was misdiagnosed to have a common cold when actually he had RSV which is a much more serious virus. The virus could have been detected with a simple swab of the mucus in his nose, but i guess that was too much to ask.

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I am so sorry yall are having to go through this. I cannot imagine. I have kept yall in my thoughts and prayers and will continue to do so. I wanted to ask if its ok to share this story with my friends and family? They all have alot of small children, and I would like to warn them about this. Thanks for sharing and may God give yall strength.

I James as his father want everyone to know this story. No one deserves this kind of torture when there were so many simple common ways to have detected and prevented this.

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I agree with you 100%. This is such a horrible situation and I am so sorry y'all have had to go through it :-(

 

I James as his father want everyone to know this story. No one deserves this kind of torture when there were so many simple common ways to have detected and prevented this.

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James was misdiagnosed to have a common cold when actually he had RSV which is a much more serious virus. The virus could have been detected with a simple swab of the mucus in his nose, but i guess that was too much to ask.

Your family is still in our prayers.

 

Would you feel comfortable sharing the name of the doctor or practice that gave the misdiagnosis? I would hate for someone to take their kids there not knowing they had made such an aweful mistake.

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Your family is still in our prayers.

 

Would you feel comfortable sharing the name of the doctor or practice that gave the misdiagnosis? I would hate for someone to take their kids there not knowing they had made such an aweful mistake.

 

We would love to be able to do that but we cant be involved in slander when it comes to something like this situation. We are just trying to give people all the info we possibly can so they know what to look for and what to make their pediatrician look for if needed.

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I James as his father want everyone to know this story. No one deserves this kind of torture when there were so many simple common ways to have detected and prevented this.

Crystal, this is Christy....I shared your story with a site that I am on, with families of children with Down Syndrome. They are all praying for you and the whole family. But in sharing the story, I hoped to educate them also. Most of the parents on that site have children under 3. So I wanted to share it with them so they will know what to watch for. Most of them had no clue what RSV was.

Matthew had RSV when he was much younger. He was in the hospital, in isolation, for about 2 weeks. He was also in an oxygen tent. But that all goes with the health issues that he had back then. I think the only reason that we caught his RSV so early is because he was on oxygen at home some with a pulse ox and had many doctor appointments with all the sinus issues that he had, since he had a Chronic Sinus Disease. So we spent most of our time in doctors offices.

 

My thoughts and prayers will remain with you and the family.

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Crystal, this is Christy....I shared your story with a site that I am on, with families of children with Down Syndrome. They are all praying for you and the whole family. But in sharing the story, I hoped to educate them also. Most of the parents on that site have children under 3. So I wanted to share it with them so they will know what to watch for. Most of them had no clue what RSV was.

Matthew had RSV when he was much younger. He was in the hospital, in isolation, for about 2 weeks. He was also in an oxygen tent. But that all goes with the health issues that he had back then. I think the only reason that we caught his RSV so early is because he was on oxygen at home some with a pulse ox and had many doctor appointments with all the sinus issues that he had, since he had a Chronic Sinus Disease. So we spent most of our time in doctors offices.

 

My thoughts and prayers will remain with you and the family.

 

Thank you Christy for making this a more well known subject.That is all the James and I are trying to do.

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I want to personally thank everyone for their thoughts and prayers. James was a very special little boy and will be greatly missed by me and James, as well as everyone else he touched during his short time here. I am having a very hard time coming to terms with the fact that my baby is no longer here and that our house is completely empty and quiet. I don't feel like I will make it and feel that all the thoughts and prayers are not working. Please continue to keep us in your prayers, especially during the next few days which will be most difficult. We are very thankful for everyone we have in our lives that are helping us get through this.

 

Thanks again,

Crystal Gentry

Bless your hearts. I have no great advice, just my good thoughts and prayers sent to you and your husband. There are a lot of wonderful people here on Pcom, so reach out if you need anything. So many of these people helped me through a tragic loss and I don't think they ever knew it. I just had a big hole in my heart and time on my hands and they helped fill it up.

Edited by momof 3
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We would love to be able to do that but we cant be involved in slander when it comes to something like this situation. We are just trying to give people all the info we possibly can so they know what to look for and what to make their pediatrician look for if needed.

I completely understand. Thank you so much for sharing your story, you have educated so many of us on what to look for with RSV. I really think a lot of people aren't familiar with it. (((hugs)))

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I completely understand. Thank you so much for sharing your story, you have educated so many of us on what to look for with RSV. I really think a lot of people aren't familiar with it. (((hugs)))

I agree, I have a 10 month old grandson and while he is fine now, if gets sick we will know what to look out for. I had no idea what it was. Thank you, I can't even imagine how difficult this is.

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My heart still breaks when I think of your situation. I do want you to look into a support group. When talking to family and friends, they want to protect you by changing the subject, or you want to protect them and avoid mentioning things you want to say. A good support group will give you the chance to say the things you can't say to your family. You can talk about things those who are close to you try to keep you from thinking about. A support group can hear your story and understand, but you don't have to soften your words to protect them. It's the freedom to say what you want to and feel the way you feel without worrying about causing someone else pain.

 

It's the words you don't say that control everything in your life. You need to find the environment to say them.

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My heart still breaks when I think of your situation. I do want you to look into a support group. When talking to family and friends, they want to protect you by changing the subject, or you want to protect them and avoid mentioning things you want to say. A good support group will give you the chance to say the things you can't say to your family. You can talk about things those who are close to you try to keep you from thinking about. A support group can hear your story and understand, but you don't have to soften your words to protect them. It's the freedom to say what you want to and feel the way you feel without worrying about causing someone else pain.

 

It's the words you don't say that control everything in your life. You need to find the environment to say them.

 

Great post PsychoMom!!

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I didn't make it in time to speak to you personally at the funeral, but wanted to let you know the service touched me deeply. As a mom myself, my heart breaks for you. Just wanting to let you know that your family continues to be in my thoughts and prayers.

 

Betsy

 

 

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Chrystal and James,

 

My heart breaks for you as I read these posts. I am so sorry for your loss. I offer my prayers and will request prayer from others for you. Please know that I will also keep your mom in my prayers. I am also a grandmother and I can't imagine something happening to my grandson...it would be absolutely devestating. Lean on our Lord and Savior to see you through and know that one day you will see your precious baby again.

 

Hope

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I pray for you, my heart breaks for you...and I want to say thank you for being strong enough to put this message out there as well. My son, who is now 17, was sick for over 3 weeks when he was a baby. We took him to the pediatrician and emergency room 15 times during that time only to be told that he had a cold and made to feel like we were crazy for being so concerned. One morning when I woke up he was barely able to breath, we took him to a different doctor and he was immediately hospitalized and diagnosed with RSV. If we had not taken him to the new doctor he would not have survived. This is an important issue that you are making people aware of. Doctors need to test ALL small children who show symtoms that could possibly be RSV. Like you said it is a simple swab test. If one person hears your story and askes a doctor to check for RSV then you have made a difference. I will continue to pray for you and your family, and I am so so sorry for your loss.

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I didn't make it in time to speak to you personally at the funeral, but wanted to let you know the service touched me deeply. As a mom myself, my heart breaks for you. Just wanting to let you know that your family continues to be in my thoughts and prayers.

 

Betsy

 

Is this the same Betsy from the Emergency room at Tanner??

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yes

I wish so badly that I would have know you were there.I cant tell you enough how much of a blessing you were to us that day. You had a large part in me keeping my sanity that day and I know you did all that you could do. Ive been told that when a child dies that it is because he was too pure for this world and what he would have encountered so I just keep telling myself that he was saved from a lot of grief here on earth, even though it has caused so much grief to me and my family. Thanks again for all you and the doctors/nurses at Tanner did. You have one of the best emergency rooms I have ever been to (and I have been to a few!). You were my angel that day and James is mine now :( :wub: :rolleyes:

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