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Post by Marya Dabrowski on Mar 19, 2017 12:00:19 GMT -5
The grandson of one of my friends will hopefully be coming home from the hospital soon. He has been in the hospital for all of the 15 months of his life. They will need RNs and LPNs to help with his 24 hour care and are currently looking for them. He and his twin sister (who died after 9 or 10 months) were born extremely premature, 24 weeks gestation I believe. He has reached all the milestones for his adjusted birth ages, can high-five, crawl, and likes to "talk" through his trach. Please say a prayer for him and his family. Thanks:)
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Post by chestertonian on Mar 19, 2017 15:35:49 GMT -5
I have trach too
Will offer this week's discontents for the little guy
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Post by Marya Dabrowski on Mar 19, 2017 21:53:51 GMT -5
I have trach too Will offer this week's discontents for the little guy Thank you! You can still speak normally, I'm assuming? He has not been able to verbalize from his mouth, is what I understand.
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Post by jen51 on Mar 19, 2017 22:18:03 GMT -5
The grandson of one of my friends will hopefully be coming home from the hospital soon. He has been in the hospital for all of the 15 months of his life. They will need RNs and LPNs to help with his 24 hour care and are currently looking for them. He and his twin sister (who died after 9 or 10 months) were born extremely premature, 24 weeks gestation I believe. He has reached all the milestones for his adjusted birth ages, can high-five, crawl, and likes to "talk" through his trach. Please say a prayer for him and his family. Thanks:) This family has been through the wringer. I'll most certainly pray for them. Do they have hopes that one day he will be able to talk unassisted?
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Post by chestertonian on Mar 19, 2017 22:46:01 GMT -5
I have trach too Will offer this week's discontents for the little guy Thank you! You can still speak normally, I'm assuming? He has not been able to verbalize from his mouth, is what I understand. I can talk but barely audible unless I use a speaking valve. only during the day, not when asleep. there are different types of traches and some are more conducive to speech than others... no speaking valve + cuff inflated (part of the trach) = no sound whatsoever which is kind of crazy at night, no way to get familys attention unless my hand is near my tablet. Thank god for text to speech at this point, it isn't as loud as my voice usually was, but I sound like myself again i'm guessing the little guy has speech and respiratory therapists who work with him? A trach goes below the vocal cords so the only way for any sound to happen is if there is some way of getting air to go up and around the trach, through a hole at the top and/or a speaking valve. is he able to vocalize at all?
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Post by Marya Dabrowski on Mar 19, 2017 23:58:27 GMT -5
The grandson of one of my friends will hopefully be coming home from the hospital soon. He has been in the hospital for all of the 15 months of his life. They will need RNs and LPNs to help with his 24 hour care and are currently looking for them. He and his twin sister (who died after 9 or 10 months) were born extremely premature, 24 weeks gestation I believe. He has reached all the milestones for his adjusted birth ages, can high-five, crawl, and likes to "talk" through his trach. Please say a prayer for him and his family. Thanks:) This family has been through the wringer. I'll most certainly pray for them. Do they have hopes that one day he will be able to talk unassisted? I think they are thinking he will have the trach for two or three years.
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Post by Marya Dabrowski on Mar 20, 2017 0:00:53 GMT -5
i'm guessing the little guy has speech and respiratory therapists who work with him? A trach goes below the vocal cords so the only way for any sound to happen is if there is some way of getting air to go up and around the trach, through a hole at the top and/or a speaking valve. is he able to vocalize at all? I don't think he can because at one point he had an infection around the trach and they had to put in a different thing and then he couldn't make any more noise. I don't know how much therapy he's doing right now.
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Post by Lynne on Mar 20, 2017 6:38:44 GMT -5
Poor little person. Prayers for him.
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Post by RitaMarita on Mar 22, 2017 19:46:01 GMT -5
Thank you! You can still speak normally, I'm assuming? He has not been able to verbalize from his mouth, is what I understand. I can talk but barely audible unless I use a speaking valve. only during the day, not when asleep. there are different types of traches and some are more conducive to speech than others... no speaking valve + cuff inflated (part of the trach) = no sound whatsoever which is kind of crazy at night, no way to get familys attention unless my hand is near my tablet. Thank god for text to speech at this point, it isn't as loud as my voice usually was, but I sound like myself again i'm guessing the little guy has speech and respiratory therapists who work with him? A trach goes below the vocal cords so the only way for any sound to happen is if there is some way of getting air to go up and around the trach, through a hole at the top and/or a speaking valve. is he able to vocalize at all? Well, you type well enough that I never would have guessed!
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Post by RitaMarita on Mar 22, 2017 19:47:11 GMT -5
The grandson of one of my friends will hopefully be coming home from the hospital soon. He has been in the hospital for all of the 15 months of his life. They will need RNs and LPNs to help with his 24 hour care and are currently looking for them. He and his twin sister (who died after 9 or 10 months) were born extremely premature, 24 weeks gestation I believe. He has reached all the milestones for his adjusted birth ages, can high-five, crawl, and likes to "talk" through his trach. Please say a prayer for him and his family. Thanks:) That must be tough for the poor family... I will definitely say some prayers for the little boy... Please keep us posted.
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Post by kim on Apr 18, 2017 4:19:40 GMT -5
I am a nurse and I work in pediatric home care sitting shifts with 2 children who are trached ---one of which is ventilator dependent and will always be. The other will probably have his trach closed at some future date.
My prayers are with this baby and his family. I pray for the marriage too because I have seen couples separate from the stressors of dealing with a medically fragile child.
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Post by Marya Dabrowski on Apr 21, 2017 8:18:52 GMT -5
I am a nurse and I work in pediatric home care sitting shifts with 2 children who are trached ---one of which is ventilator dependent and will always be. The other will probably have his trach closed at some future date. My prayers are with this baby and his family. I pray for the marriage too because I have seen couples separate from the stressors of dealing with a medically fragile child. Thanks Kim. He came home at the end of Mar. I hope his mom can adjust to others helping with his care. The nursing agency backed out on them because they didn't require enough hours per week so it's a lot of non-medical people filling in.
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Post by Marya Dabrowski on Jul 5, 2017 22:57:26 GMT -5
Little update...They are trying to wean him off his steroids because they apparently they make your head and feet grow big while your trunk stays little. the mom posted a few youtubes...
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Post by Lynne on Jul 9, 2017 5:21:59 GMT -5
Sweet update!
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Post by jen51 on Jul 9, 2017 12:07:54 GMT -5
What a sweet boy. Thankyou for the update!
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