Post by Amy Lombardi on Apr 1, 2009 8:30:16 GMT -5
Subject: update on Sarah Inks
Name: Sue Inks
Date Posted: Dec 11, 08 - 1:54 PM
Email: Click here to Email
Instant Messenger: trappedonland
Message: I wanted to give everyone an update on how Sarah is doing. This has been a very tough year for her health wise.Sadly she has had the biggest decline since being diagnosed.
In August she stopped eating and drinking. She got down to 80 lbs. and stopped walking almost completely. With appetite stimulating medication, she started eating again and gained back some weight. Unfortunately this didn't last and she is eating and drinking much less than her body needs. After much consulting with her medical team, other Battens families, researching, and a lot of soul searching, I have made the decision to have a feeding tube put in.
She will have the surgery on Jan. 7th at Methodist Children's Hospital in Omaha.I feel frightened and sad that it has come to this point, but Sarah is otherwise happy and I am doing my best to preserve the best quality of life for her for as long for as possible.
I ask everyone for prayers during this difficult time and thank you for your support. I will try to keep everyone posted.
Love,
Sue Inks
Name: Nori
Date Posted: Dec 11, 08 - 4:46 PM
Email: Click here to Email
Message: Sue,
You will not be sorry. I'll bet you Sarah will be like a different kid after her nutrition and hydration has improved. If you're dealing with a relatively healthy kid, the surgery is a breeze. I know you're very worried, and I can say don't be, but you still will be. She'll be fine
Name: Corrina Dahl
Date Posted: Dec 11, 08 - 7:56 PM
Message: Sue I am so sorry Sarah has had such a rough year. I hope the surgery goes well and she feels a whole lot better afterward. You and she will be in my prayers.
Name: Chris Geer
Date Posted: Dec 12, 08 - 6:59 AM
Email: Click here to Email
Message: I am sorry Sarah has had a rough year. I'll be keeping her in my prayers for her upcoming surgery. Jacob has had his feeding tube for over 4 yrs (due to other issues at the time not related to his new diagnosis with Batten Disease). I will say you will be surprised at how much of a difference it will make. It is a huge stress reliever and a great way to make sure she stays hydrated esp. when sick and her system is already down. Hang in there!
Name: Martha
Date Posted: Dec 12, 08 - 7:49 PM
Email: Click here to Email
Message: My son had a tube put in May 07 because he was not drinking. Since the tube, we keep him well hydrated and give him some food. He continues to be able to eat. He is happy and laughing and we no longer have to force bad tasting medicine and drinking on him. The tube has enabled him to be healthier with less trips to the hospital for infections (he has a catheter) and better BM program (meds go done the tube). Each surgery is difficult for us and the feeding tube has many connotations that really do not apply to children. Michael's surgery was eventually done by a surgeon after the gastro guy could not find his stomach. This a whole new world when you have a tube. I got on a feeding tube listserv and they tuned me into a "declogger" which is a miracle tool every caregiver needs to have. Make sure you go home from the hospital with one.
Please feel free to email me if you have questions.
Martha
Mom of Michael, 22 yrs old with progressive neurodegenerative unknown disease similiar to Battens and misdiagnosed as Battens for two years.
Name: lincldad
Date Posted: Dec 14, 08 - 3:20 AM
Email: Click here to Email
Message: I feel for you. The tube will be a positive. Email me if you like.
Name: Dawn
Date Posted: Dec 15, 08 - 7:38 PM
Email: Click here to Email
Message: I just wanted to say that I know it's not easy, my son had a tube but in October of 07 due to Batten's and I have to say, It's the best thing I have ever done for him. He is a nice weight, look healthier and is healthier. The doctor that did the tube for us asked me, if I had any regreats and I told him "NO" and if I had I would do it all over again! Chin up and my prayers will be with you!
Name: Dawn Collins
Date Posted: Dec 16, 08 - 8:23 AM
Email: Click here to Email
Message: Hi Sue,
I'm so sorry to hear that Sarah is going through this. I hold a very special place in my heart for her. It will be almost a year (January) that Becca has had the G-Tube. This time last year, I felt like you do, what a huge step back but honestly it was the best decision we ever made for Becca. Within days after surgery, Becca was so much happier and more alert, her tummy was finally full. Since the surgery, she continously giggles and it's the best sound in the whole world. She has gained nineteen pounds too. I also know that she's getting all her seizure meds, where before it was always falling out of her mouth. She has been seizure free since. Please know that I'm here always for you and that I'll be praying for Sarah.
Much love to your family,
Dawn
Name: Sue Inks
Date Posted: Dec 11, 08 - 1:54 PM
Email: Click here to Email
Instant Messenger: trappedonland
Message: I wanted to give everyone an update on how Sarah is doing. This has been a very tough year for her health wise.Sadly she has had the biggest decline since being diagnosed.
In August she stopped eating and drinking. She got down to 80 lbs. and stopped walking almost completely. With appetite stimulating medication, she started eating again and gained back some weight. Unfortunately this didn't last and she is eating and drinking much less than her body needs. After much consulting with her medical team, other Battens families, researching, and a lot of soul searching, I have made the decision to have a feeding tube put in.
She will have the surgery on Jan. 7th at Methodist Children's Hospital in Omaha.I feel frightened and sad that it has come to this point, but Sarah is otherwise happy and I am doing my best to preserve the best quality of life for her for as long for as possible.
I ask everyone for prayers during this difficult time and thank you for your support. I will try to keep everyone posted.
Love,
Sue Inks
Name: Nori
Date Posted: Dec 11, 08 - 4:46 PM
Email: Click here to Email
Message: Sue,
You will not be sorry. I'll bet you Sarah will be like a different kid after her nutrition and hydration has improved. If you're dealing with a relatively healthy kid, the surgery is a breeze. I know you're very worried, and I can say don't be, but you still will be. She'll be fine
Name: Corrina Dahl
Date Posted: Dec 11, 08 - 7:56 PM
Message: Sue I am so sorry Sarah has had such a rough year. I hope the surgery goes well and she feels a whole lot better afterward. You and she will be in my prayers.
Name: Chris Geer
Date Posted: Dec 12, 08 - 6:59 AM
Email: Click here to Email
Message: I am sorry Sarah has had a rough year. I'll be keeping her in my prayers for her upcoming surgery. Jacob has had his feeding tube for over 4 yrs (due to other issues at the time not related to his new diagnosis with Batten Disease). I will say you will be surprised at how much of a difference it will make. It is a huge stress reliever and a great way to make sure she stays hydrated esp. when sick and her system is already down. Hang in there!
Name: Martha
Date Posted: Dec 12, 08 - 7:49 PM
Email: Click here to Email
Message: My son had a tube put in May 07 because he was not drinking. Since the tube, we keep him well hydrated and give him some food. He continues to be able to eat. He is happy and laughing and we no longer have to force bad tasting medicine and drinking on him. The tube has enabled him to be healthier with less trips to the hospital for infections (he has a catheter) and better BM program (meds go done the tube). Each surgery is difficult for us and the feeding tube has many connotations that really do not apply to children. Michael's surgery was eventually done by a surgeon after the gastro guy could not find his stomach. This a whole new world when you have a tube. I got on a feeding tube listserv and they tuned me into a "declogger" which is a miracle tool every caregiver needs to have. Make sure you go home from the hospital with one.
Please feel free to email me if you have questions.
Martha
Mom of Michael, 22 yrs old with progressive neurodegenerative unknown disease similiar to Battens and misdiagnosed as Battens for two years.
Name: lincldad
Date Posted: Dec 14, 08 - 3:20 AM
Email: Click here to Email
Message: I feel for you. The tube will be a positive. Email me if you like.
Name: Dawn
Date Posted: Dec 15, 08 - 7:38 PM
Email: Click here to Email
Message: I just wanted to say that I know it's not easy, my son had a tube but in October of 07 due to Batten's and I have to say, It's the best thing I have ever done for him. He is a nice weight, look healthier and is healthier. The doctor that did the tube for us asked me, if I had any regreats and I told him "NO" and if I had I would do it all over again! Chin up and my prayers will be with you!
Name: Dawn Collins
Date Posted: Dec 16, 08 - 8:23 AM
Email: Click here to Email
Message: Hi Sue,
I'm so sorry to hear that Sarah is going through this. I hold a very special place in my heart for her. It will be almost a year (January) that Becca has had the G-Tube. This time last year, I felt like you do, what a huge step back but honestly it was the best decision we ever made for Becca. Within days after surgery, Becca was so much happier and more alert, her tummy was finally full. Since the surgery, she continously giggles and it's the best sound in the whole world. She has gained nineteen pounds too. I also know that she's getting all her seizure meds, where before it was always falling out of her mouth. She has been seizure free since. Please know that I'm here always for you and that I'll be praying for Sarah.
Much love to your family,
Dawn