nikkib
01-24-2007, 02:52 PM
Ok, this is a very sad post, but I really need some answers for my friend....
Her little boy, Luke was diagnosed with Mitochondrial disease after it was brought on after drinking a vial of athsma medication that burn his poor little eosophagus. Anyway to cut a very long story short, Luke has been told that he wont live to the age of 5 by his doctors and he has progressively gotten worse with this disease. He is soley fed by gastrostomy tube (only 20ml hour) is what he tolerates at the moment and he is on TPN also. He also has a central line which is a source of much problems with infection and his gut is now failing and not working as that is where the disease has attacked him. His mother I met while visiting my sister in the childrens hospital with her daughter and we have become wonderful friends. Luke has been in hospital for the best part of 2 years now, with a few short stints at home when he does get well. Just before christmas they told them that he only had a few days to live and he is still here...doing alot better. The problem is that because his gut doesn't work he gets major bacterial infections and sepsus. He desperately needed this operation that my surgeon said he would do for him, but he was at a different hospital and lukes doctors wouldn't do it and were lying to kylie about the proceedure and saying that they wont even treat luke if he gets sick again and wont give him and ICU bed or anything. Not right if you ask me.... anyway, my friend finally got the courage and fight for her son to take him to the other hospital and see my surgeon. She just signed him out and they took him in their car to the other hospital about an hour away... the good news is that Dr Shun said that he will do the proceedure but they just have to have a case conference with the whole team. My friend is over the moon. this could help Luke so much. She thinks the op is called a fundoplasty. The other thing is that he will need an ileostomy. Does anyone have one of these and could help her with info on that? or has anyone had a fundoplasty...note this is NOT a fundo. Anyway, she knows that Luke has a terminal disease but would do anything to keep him here, and she knows that he obviously goes through some very painful times (when he was sick before christmas he vomits pure acid and has pots of bile being drained out of him and temps of 40deg. celcius+ etc...very very sick...), but she will do anything to keep him here. Wouldn't you?! I feel so much for them and wish there was more I could do for them. They also have a 2 year old boy who is at home with her grandmother and MIL all the time. She hardly ever sees him. It is so hard on their family, but they remain strong. Please pray for him and if anyone has any experience with mitochondrial disease, fundoplasty or ileostomy, please let me know as she would love to speak to you about it.
Thanks..
Her little boy, Luke was diagnosed with Mitochondrial disease after it was brought on after drinking a vial of athsma medication that burn his poor little eosophagus. Anyway to cut a very long story short, Luke has been told that he wont live to the age of 5 by his doctors and he has progressively gotten worse with this disease. He is soley fed by gastrostomy tube (only 20ml hour) is what he tolerates at the moment and he is on TPN also. He also has a central line which is a source of much problems with infection and his gut is now failing and not working as that is where the disease has attacked him. His mother I met while visiting my sister in the childrens hospital with her daughter and we have become wonderful friends. Luke has been in hospital for the best part of 2 years now, with a few short stints at home when he does get well. Just before christmas they told them that he only had a few days to live and he is still here...doing alot better. The problem is that because his gut doesn't work he gets major bacterial infections and sepsus. He desperately needed this operation that my surgeon said he would do for him, but he was at a different hospital and lukes doctors wouldn't do it and were lying to kylie about the proceedure and saying that they wont even treat luke if he gets sick again and wont give him and ICU bed or anything. Not right if you ask me.... anyway, my friend finally got the courage and fight for her son to take him to the other hospital and see my surgeon. She just signed him out and they took him in their car to the other hospital about an hour away... the good news is that Dr Shun said that he will do the proceedure but they just have to have a case conference with the whole team. My friend is over the moon. this could help Luke so much. She thinks the op is called a fundoplasty. The other thing is that he will need an ileostomy. Does anyone have one of these and could help her with info on that? or has anyone had a fundoplasty...note this is NOT a fundo. Anyway, she knows that Luke has a terminal disease but would do anything to keep him here, and she knows that he obviously goes through some very painful times (when he was sick before christmas he vomits pure acid and has pots of bile being drained out of him and temps of 40deg. celcius+ etc...very very sick...), but she will do anything to keep him here. Wouldn't you?! I feel so much for them and wish there was more I could do for them. They also have a 2 year old boy who is at home with her grandmother and MIL all the time. She hardly ever sees him. It is so hard on their family, but they remain strong. Please pray for him and if anyone has any experience with mitochondrial disease, fundoplasty or ileostomy, please let me know as she would love to speak to you about it.
Thanks..