Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 I'm sorry to hear of Daires' sickness. My wife & I just got done saying one for you all... My heart was in my throat as I read your post. If I were in your position, I would share a limited amount of your fears with the sybilings. I'd also consider organ donation so that some part of Daire could/would live on & help another child. <hugs> I'm so sorry sweet lady. Please keep us posted, knowing we are thinking about you heavily & well be praying for you all. K. Cody's dad age 12 PBNH & PMG Dilantin Topomax **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 , Daire, & Family My prayers and thoughts are with you and your family tonight. May a new year bring renewed hope and strength for your family. Daire is fighting for his life and you and your family have done everything in your power to help him. It is a journey and it is far from being over. I know when the doctors thought my 95 year old grandpa would not make it another night, the little we knew about Spring Forest Qigong, we tried just simply by touching him and transfering our strength and energy to him and taking his pain from him. He is still holding his own a year later. My niece with PMG was visiting from Brazil this past summer. In Minnesota we have a Spring Forest Qiqong center and she went and did a couple private sessions there with Master Lin. Amazing her noticeable improvements with walking and more calmness. http://www.springforestqigong.com/ > > As I sit here typing this I fear Daire is slipping away from us. We > are so worried about him we have kept a 24 hour vigil by his bed for > the past 2-3 days. > He's been sick all over Christmas. We were up in my parents house for > much of this, so they too saw how quick he's deteriorated. He has not > smiled in days he's not even responding to his name or the antics of > his siblings. > > He's lying in the fetal position in bed, we've taken him out and held > him, but he cries unconsolably. For the past 3 days since getting > home we've held a 24 hour vigil by his bed. We have even had a > discussion of what our wishes would be if he were dying. We both > agree we want him to die at home. > > He's not holding down feeds since 26th, we've diluted them down to > 70% water: 30% of feed without success. He's now on Diorolyte just to > keep his salts up the GP has agreed with out wishes of keeping him at > home for as long as possible. He feels there are worse things he > could pick up in hospital. We have discussed a DNR order on him. > > He's a desperate grey colour and he's crying a lot of the time, > despite pain medication. We really don't know what to do best we've > fought to get this far. We know he's tired from his recent illness - > really hes had 2 weeks since October where he's been well. He's lost > so much weight Dietician has already told us that he doesn't have > much to fight yet another infection. > > We are so distraught, but at the same time are trying to get on with > things as the other 3 kids need our attention also. Oh what to do? I > cry just going into his room - I check from the door if he's > breathing. I'm so scared to loose him, but at the same time wouldnt > like him to suffer on like he is. > > Do I tell his siblings how were feeling and how sick Daire is? I feel > he's got very little fight in him this time round. What do we do? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 Our thoughts and prayers are with you, I hope that Daire pulls through, but I agree that it would not be good for him to suffer either. Please keep us posted. dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? Mom 2 Evan Left Spastic Hemiplegia 3yrs old, 6.5yrs nda and SM to 15.5yrs www.justinichfamily.blogspot.com --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 I just do not understand why you wouldnt bring a child this sick into a pediatric ICU. I know here, the strictness of RSV quarantine this time of year, make it far more sensible to have them closely monitored. I sat here and cried, because there has to be someone who can make some serious decisions regarding specific ways to help him... I know how great you are...but I guess I just don't understand why a pediatrician would opt to just let the child suffer without guidance of a specialist team in the hospital.. it sounds like he needs IV fluids... and has for days...it sounds like he needs oxygen, and round the clock monitoring by respiratory technicians and experts. But I pray for him today...that his little body will heal...and that you will bring him to the hands of caregivers that will take medical measures to help him. The one thing that I find remarkable in these kids is their resiliency... I dont know a single doctor here in New England that would tell us to keep away from the hospital if was as sick as Daire...because of fear of germs in the hospital... seriously..... that just sounds strange...and we have watched our son go from Connecticut to New York via airlift helicopter to get him to a pediatric respirator... Is it that much more advanced in the states?? If you have a child at Yale New Haven hospital this time of year... they FORBID visitors, you have to remove your shoes and put on scrubs, and the germ warfare is paramount. Probably less germs there than with a house full of children. I have been reading your posts...and I guess I just don't understand why he isnt in the hospital. But regardless...prayers you all. had a pneumonia too..on November 25th..and we did take him to the hospital..they ran him on IV fluids, breathing treatments, ceftin, and suctioned him. He is much better now... and just got his " THE VEST " equipment which is designed to help him move mucus around. God bless you ....I'm sure you are doing your best for your angel...and you must be so tired. With Love... ....Mom to , age 10 dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 Daire and your family are in our prayers. I would share what you think your other children can handle about their brother. Again, our hearts are breaking just reading your posting. Please keep us posted. & Tracie Kruempel Jake (6)BPMG Jillian & Isabelle (3) As I sit here typing this I fear Daire is slipping away from us. We > are so worried about him we have kept a 24 hour vigil by his bed for > the past 2-3 days. > He's been sick all over Christmas. We were up in my parents house for > much of this, so they too saw how quick he's deteriorated. He has not > smiled in days he's not even responding to his name or the antics of > his siblings. > > He's lying in the fetal position in bed, we've taken him out and held > him, but he cries unconsolably. For the past 3 days since getting > home we've held a 24 hour vigil by his bed. We have even had a > discussion of what our wishes would be if he were dying. We both > agree we want him to die at home. > > He's not holding down feeds since 26th, we've diluted them down to > 70% water: 30% of feed without success. He's now on Diorolyte just to > keep his salts up the GP has agreed with out wishes of keeping him at > home for as long as possible. He feels there are worse things he > could pick up in hospital. We have discussed a DNR order on him. > > He's a desperate grey colour and he's crying a lot of the time, > despite pain medication. We really don't know what to do best we've > fought to get this far. We know he's tired from his recent illness - > really hes had 2 weeks since October where he's been well. He's lost > so much weight Dietician has already told us that he doesn't have > much to fight yet another infection. > > We are so distraught, but at the same time are trying to get on with > things as the other 3 kids need our attention also. Oh what to do? I > cry just going into his room - I check from the door if he's > breathing. I'm so scared to loose him, but at the same time wouldnt > like him to suffer on like he is. > > Do I tell his siblings how were feeling and how sick Daire is? I feel > he's got very little fight in him this time round. What do we do? > > > > > > > Mom 2 Evan Left Spastic Hemiplegia 3yrs old, 6.5yrs nda and SM to 15.5yrs > > www.justinichfamily.blogspot.com > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 ...I hope my last post didnt sound too weird... I care so much you and your family and have never met you. There was so much mention of dying, of DNR, of what to tell your children..etc... don't give up... bring him to the hospital...why wouldnt you try to heal his infection with antibiotic, and get his strength up with fluids... if your doctor isnt helping him...get a second opinion..or something.. get him to see someone.. because perhaps its just an infection that could easily be treated another way.... Don't give up on your positive power.... God bless you.... dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 , I just read your post and I will be praying for you asking that God gives you direction. I completely agree with . Try to get a second opinion. I got tired of fighting my 's Dr, until I decided to change and this was the best decision I made in my life. I insist, please consider glyconutrients, you can give them through the feeding tube. I found another company that has a similar product that Mannatech has (I do not want you to think that I am pushing just because I use it with my son, God is my witness that I do not want to make 1 cent on this), their name is Glycomannan and you can order it through the Internet. It will not hurt, this is food, not medicine, and you have a chance of helping. I have the dosage guidelines and I will send them to you if you wish. Don't give up! I know you are tired. God Bless you and your family. Deborah JULIE HASSELBERGER wrote: ...I hope my last post didnt sound too weird... I care so much you and your family and have never met you. There was so much mention of dying, of DNR, of what to tell your children..etc... don't give up... bring him to the hospital...why wouldnt you try to heal his infection with antibiotic, and get his strength up with fluids... if your doctor isnt helping him...get a second opinion..or something.. get him to see someone.. because perhaps its just an infection that could easily be treated another way.... Don't give up on your positive power.... God bless you.... dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hi All, Its not the first time our Paediatric unit has told us to keep him at home. That he's at higher risk in Hospital than at home. Yes by the sounds of things things are alot better in the USA than here in Ireland. I am not giving up on him by no means, just that he's not been well since last summer for more than a few days. School wont take him on an antibiotic. Brought him to Doctors today, he's on a stronger Anti-Biotic. I was told to ask for a Home Visit as he was obviously not well enought to bring out. Yet she didnt feel he was sick enough to be admitted to hospital, despite me explaining he's holding down nothing since Thursday. I also pointed out thats his weight is so low he's not reserves to be on a 7up diet for long. That his dietician was already worried of his Failure to Thrive. That he's gagging and choking on the phlem he's bringing up as he is not strong enough to get it out of his mouth. Still no mention of Suction machine. I have him on 250mls at 150mls an hour of flat 7up. If this comes up I feel he needs IV fluids in a Hospital bed. Though even when he's been admitted to hospital he's never been suctioned, been put on oxygen. He's put on IV fluids for 12-18hours then back on feeds usually at full strength. He's been given 2 nebulisers in the past 5 years. Never given oxygen, yet they have proven he stops breathing especially when he's sick. He has an ENT assessment on the 10th January - to assess for drooling operation. We are not ready to give up the fight just yet! I agee with , he is very resilient. Has bounced back from everything so far, my parents have also seen a slow deterioration in him over the past 6 months. This more than his present illness has me worried. Well as hard as it is to believe we have been told that he would be better off at home. In the hospitals here you can walk in and out of all wards with exception of ICU. Patients wander from room to room, Nurses smell of cigarettes, alot dont wash hands between patients (Ive watched this). I have never been asked to wear hospital scrubs or take off my shoes etc as mentions. The hospital Daire attends does not have an PICU, nearest is a 20 minute drive away thats with no other traffic on the roads. We're all hoping he rallies around and gets over this illness like the ones before. I'll keep you updated. Heres to a Happier, Healthier 2008! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 I recently lost my dad, I know how hard it is to let go, but sometimes it is what is best. No, we would not want any more suffering, but we don't ever want to lose hope for a miracle. Wishing you strength and for the pain to end. Love, Liz -- Oh What do we do? As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 We will keep you in our daily prayers. My heart breaks for you and your family. You are a wonderful mother who is doing her best. Rest assured you are giving him you best care. I will pray that you receive continued strength and the guidence that you now need. Hugs and blessings to you and your family, Bonnie (grandmother to Lindsey 5 YO with severe PMG) dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? --------------------------------- Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 I am with on this one, our Chloe became ill 2 years ago with pneumonia and would not eat etc and started to deteriate. In hospital (we live in the UK) she was on intravenous feed and antibiotics and after a couple of weeks pulled through. Without this treatment I often think she may not be here today. This led us to go for a gastrostomy feed tube which we had held back on up till then. We have never regretted that either and now realise the importance of good nutrition for her general well being and also more resilience against seizures. I really do not think the UK hospitals are that bad. We wish all the best to Daire. Dom, father to Chloe, Cerebral palsy with four limb disorder secondary to diffuse bilateral polymicrogyria, Severe development delay, epilepsy with generalised and partial seizures, G Tube, two ops on each hip. age 6 Re: Oh What do we do? I just do not understand why you wouldnt bring a child this sick into a pediatric ICU. I know here, the strictness of RSV quarantine this time of year, make it far more sensible to have them closely monitored. I sat here and cried, because there has to be someone who can make some serious decisions regarding specific ways to help him... I know how great you are...but I guess I just don't understand why a pediatrician would opt to just let the child suffer without guidance of a specialist team in the hospital.. it sounds like he needs IV fluids... and has for days...it sounds like he needs oxygen, and round the clock monitoring by respiratory technicians and experts. But I pray for him today...that his little body will heal...and that you will bring him to the hands of caregivers that will take medical measures to help him. The one thing that I find remarkable in these kids is their resiliency... I dont know a single doctor here in New England that would tell us to keep away from the hospital if was as sick as Daire...because of fear of germs in the hospital... seriously..... that just sounds strange...and we have watched our son go from Connecticut to New York via airlift helicopter to get him to a pediatric respirator... Is it that much more advanced in the states?? If you have a child at Yale New Haven hospital this time of year... they FORBID visitors, you have to remove your shoes and put on scrubs, and the germ warfare is paramount. Probably less germs there than with a house full of children. I have been reading your posts...and I guess I just don't understand why he isnt in the hospital. But regardless...prayers you all. had a pneumonia too..on November 25th..and we did take him to the hospital..they ran him on IV fluids, breathing treatments, ceftin, and suctioned him. He is much better now... and just got his " THE VEST " equipment which is designed to help him move mucus around. God bless you ....I'm sure you are doing your best for your angel...and you must be so tired. With Love... ....Mom to , age 10 dairewendy wrote: As I sit here typing this I fear Daire is slipping away from us. We are so worried about him we have kept a 24 hour vigil by his bed for the past 2-3 days. He's been sick all over Christmas. We were up in my parents house for much of this, so they too saw how quick he's deteriorated. He has not smiled in days he's not even responding to his name or the antics of his siblings. He's lying in the fetal position in bed, we've taken him out and held him, but he cries unconsolably. For the past 3 days since getting home we've held a 24 hour vigil by his bed. We have even had a discussion of what our wishes would be if he were dying. We both agree we want him to die at home. He's not holding down feeds since 26th, we've diluted them down to 70% water: 30% of feed without success. He's now on Diorolyte just to keep his salts up the GP has agreed with out wishes of keeping him at home for as long as possible. He feels there are worse things he could pick up in hospital. We have discussed a DNR order on him. He's a desperate grey colour and he's crying a lot of the time, despite pain medication. We really don't know what to do best we've fought to get this far. We know he's tired from his recent illness - really hes had 2 weeks since October where he's been well. He's lost so much weight Dietician has already told us that he doesn't have much to fight yet another infection. We are so distraught, but at the same time are trying to get on with things as the other 3 kids need our attention also. Oh what to do? I cry just going into his room - I check from the door if he's breathing. I'm so scared to loose him, but at the same time wouldnt like him to suffer on like he is. Do I tell his siblings how were feeling and how sick Daire is? I feel he's got very little fight in him this time round. What do we do? In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Hi All, Just to clear something up, for those that don't know we live in Ireland not the UK. Daire now has what looks like diluted blood in urine - it's a pinky orange colour. Is this what it could be or are we now looking for things? He's not even coughing properly. He's had his antibiotics and we're thinking of putting him back on 50:50 mix feeds. See if he keeps it down. My mother is coming down to see us tomorrow, I'm going to be very interested in how good or bad she thinks Daire is now after a few days away from him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Hi, I have been following your thread and if this was my child it would be in hospital where it would get the proper treatment. I could say more but it is too upsetting to read of your childs deterioration. If the hospital where you are says it is better for your child to stay home than I would go as fast as I could to another hospital where they will show more care for my child. I am sorry if this upsets you but it has upset me. Janice mom to Kym (Ohtahara syndrome and PMG) Re: Oh What do we do? Hi All, Just to clear something up, for those that don't know we live in Ireland not the UK. Daire now has what looks like diluted blood in urine - it's a pinky orange colour. Is this what it could be or are we now looking for things? He's not even coughing properly. He's had his antibiotics and we're thinking of putting him back on 50:50 mix feeds. See if he keeps it down. My mother is coming down to see us tomorrow, I'm going to be very interested in how good or bad she thinks Daire is now after a few days away from him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 , My heart goes out to you. I am sending BIG hugs your way! It is so incredibly difficult to watch our children deteriate and feel so helpless. I know you are thinking of every possible cause and solution, and it is so hard when the docters don't have the answers. My son Max was slowly deteriating for over a year, and then had a tube revision and was down to 1 oz an hour with his feeds and still vomiting. He also was crying all the time or listless. This went on for some time. It was heart breaking and like you, I wondered if he would ever pull through. The doctors in town (and we live where there are many specialist) had no answers for us. We just happened to have an appointment with his neurologist in another city an hour away that we had scheduled months before. When we told her our concerns she immediately wanted him admitted to the hospital where she practices and had a full team of doctors go over every possible cause. I do believe he was dehydrated, and the doctors there made some changes that really helped Max. He still cried all night long for about three months, but now he is happy, healthy and back to his prior self. I share this with you in the hopes that it will be helpful in some way. It is possible the other hospital may be more experienced and so may have some answers that can help Daire. The other possibility is they won't and in that case, be strong, hold Daire tightly as you already do and feel his love and presence while you have him. And of course, pray, pray, pray. Don't be afraid , you are strong and will be able to handle whatever comes. We did share with our other kids how sick Max was, but didn't tell them we were afraid he wouldn't pull through. We just didn't want it to come as a complete surprise if things turned worse. You know your kids best and the situation best, and will know when and if you need to tell your other kids more. You know Daire, and you know the situation with his health, and the medical centers available to you. Don't be afraid to fight for his care if you feel he isn't getting what you feel is needed, but at the same time, if that is not the case and you feel that Daire is getting all the care he can and still isn't turning around, then don't be afraid to accept that his time has come, and rejoice for having had the blessing of him in your family. Keep us posted and you are in our hearts and in our prayers. Joanie & Max (7yrs) Quote Link to comment Share on other sites More sharing options...
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