Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 First of all, JD is getting RSV shots. Today he was having trouble breathing and nothing was working. The doctors had bag him and he went up to the ICU floor. I didn't know all of this and walked into his room and he was no where to be found. When they told me, I just flipped out and almost fainted. They called , I was just crying way too much to handle everything now. I'll let you know more later on. & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 sorry to hear about jd hopefully he gets better real soon take care mommy to {15 month old CHARGEr} JD in ICU First of all, JD is getting RSV shots. Today he was having trouble breathing and nothing was working. The doctors had bag him and he went up to the ICU floor. I didn't know all of this and walked into his room and he was no where to be found. When they told me, I just flipped out and almost fainted. They called , I was just crying way too much to handle everything now. I'll let you know more later on. & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 they should of called stupid people > > sorry to hear about jd hopefully he gets better real soon take care > mommy to {15 month old CHARGEr} > > JD in ICU > > First of all, JD is getting RSV shots. Today he was having trouble > breathing > and nothing was working. The doctors had bag him and he went up to the ICU > > floor. I didn't know all of this and walked into his room and he was no > where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. > I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, > Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 My prayers are with JD and your family. May God bless you and pull you through this difficult period. Crickmore - mom to ph 24 yr old cHaRGE'r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 and , I will continue to pray for JD!! Hugs, Crystal mom to (10), (3), and Eva (20 month old CHARGEr) wife to Dan in Illinois > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Amita also got RSV inspite of getting the synagis shots. While she was at Childrens ICU all attempts at extubating her would fail and her heart rate and breathing would start failing. After 2 wks Dr. Gelfand started to talk about the possibility of putting a trach and sending her home on the ventilator. It seemed so dark and bleak then. But a chance lung function test showed an obstruction in her airway, a MRI/CAT scan showed that she had a severe vascular ring. Heart surgery followed etc. etc. One month later she was home and the drs. said it was a miracle. Hang in there, grit your teeth and just get thru the hard times. We are all praying for you. Hopefully all our collective prayers will be heard and JD will get better soon. While right now it seems a trivial thing to mention, one of the things that we did in the ICU was to play Amita's fave CD over and over near her ears after putting on her hearing aid's. She was heavily sedated but we persisted with that and getting some of her toys from home and letting it touch her hands etc esp the vibrating ones and ones that play music etc. Hang in there and help JD fight the RSV. Take Care, Deepta > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 What horrible shock! I hope the rest of the days bring good news and happy surprises. My prayers are with JD. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 praying too, that he turns the corner soon! Les x > What horrible shock! I hope the rest of the days bring good news and happy > surprises. My prayers are with JD. > > > > Michele W > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 That is so similar to Kendra's experience with a vascular ring, Deepta. But in JD's, case he would have already had the vascular ring ruled out, right? It seems he has the same doctor who would have been aware of the possibility? Re: JD in ICU Amita also got RSV inspite of getting the synagis shots. While she was at Childrens ICU all attempts at extubating her would fail and her heart rate and breathing would start failing. After 2 wks Dr. Gelfand started to talk about the possibility of putting a trach and sending her home on the ventilator. It seemed so dark and bleak then. But a chance lung function test showed an obstruction in her airway, a MRI/CAT scan showed that she had a severe vascular ring. Heart surgery followed etc. etc. One month later she was home and the drs. said it was a miracle. Hang in there, grit your teeth and just get thru the hard times. We are all praying for you. Hopefully all our collective prayers will be heard and JD will get better soon. While right now it seems a trivial thing to mention, one of the things that we did in the ICU was to play Amita's fave CD over and over near her ears after putting on her hearing aid's. She was heavily sedated but we persisted with that and getting some of her toys from home and letting it touch her hands etc esp the vibrating ones and ones that play music etc. Hang in there and help JD fight the RSV. Take Care, Deepta > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 -- Re: Re: JD in ICU That is so similar to Kendra's experience with a vascular ring, Deepta. But in JD's, case he would have already had the vascular ring ruled out, right? It seems he has the same doctor who would have been aware of the possibility? Re: JD in ICU Amita also got RSV inspite of getting the synagis shots. While she was at Childrens ICU all attempts at extubating her would fail and her heart rate and breathing would start failing. After 2 wks Dr. Gelfand started to talk about the possibility of putting a trach and sending her home on the ventilator. It seemed so dark and bleak then. But a chance lung function test showed an obstruction in her airway, a MRI/CAT scan showed that she had a severe vascular ring. Heart surgery followed etc. etc. One month later she was home and the drs. said it was a miracle. Hang in there, grit your teeth and just get thru the hard times. We are all praying for you. Hopefully all our collective prayers will be heard and JD will get better soon. While right now it seems a trivial thing to mention, one of the things that we did in the ICU was to play Amita's fave CD over and over near her ears after putting on her hearing aid's. She was heavily sedated but we persisted with that and getting some of her toys from home and letting it touch her hands etc esp the vibrating ones and ones that play music etc. Hang in there and help JD fight the RSV. Take Care, Deepta > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 My name is Rose. My daughter Kaylin " maybe " had CHARGE. She also ended up being fighting Leukemia. She passed away unexpectedly last week. I am trying to find another CHARGER and her parents but at this time my life has spun out of control and I cannot find their number. I know they would like to know. Could you please ask maybe on the group listing and see if anyone might have their address or phone number? Thank you. They live in the Los Angeles, California area. Their last name is Khouri. CHARGER is Cierra (4 and a half years old). Dad is . Mom is Eloise or Eloisa. I have been a member since my daughter was born, taken great information, comfort, joy, and love reading the messages but I have not ever posted a message. I know you are very active so I was just wondering if you could post a question out for me. Of course, thank you and all more than words can say. The Group understands I know. That has a been a great comfort to us these years.If anyone knows them, my e-mail is krose2@... or (310)612-4075. Re: JD in ICU Amita also got RSV inspite of getting the synagis shots. While she was at Childrens ICU all attempts at extubating her would fail and her heart rate and breathing would start failing. After 2 wks Dr. Gelfand started to talk about the possibility of putting a trach and sending her home on the ventilator. It seemed so dark and bleak then. But a chance lung function test showed an obstruction in her airway, a MRI/CAT scan showed that she had a severe vascular ring. Heart surgery followed etc. etc. One month later she was home and the drs. said it was a miracle. Hang in there, grit your teeth and just get thru the hard times. We are all praying for you. Hopefully all our collective prayers will be heard and JD will get better soon. While right now it seems a trivial thing to mention, one of the things that we did in the ICU was to play Amita's fave CD over and over near her ears after putting on her hearing aid's. She was heavily sedated but we persisted with that and getting some of her toys from home and letting it touch her hands etc esp the vibrating ones and ones that play music etc. Hang in there and help JD fight the RSV. Take Care, Deepta > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Liz, you are asking an excellent question. In our case, our daughter did not have open-heart surgery prior to the finding of the vascular ring. I don't know about Deepta's experience. Our daughter has never had open-heart surgery. She had the vascular ring/double aortic arch repaired and at the same time they reparied the PDA. This is considered vasuclar surgery. She was two years old at the time. Prior to the vascular ring/double aortic arch surgery, she had had at least 15 or more bronchoscopies directly visualizing the narowing of the trachea of the double aortic arch, and it wasn't diagnosed. She had also had barium swallow studies showing the indentation in the esophagus and in the trachea due to the vascular ring/double aortic arch, and it wasn't diagnosed. She had had esophageal and tracheal dilations on many occasions to open up the narrowness from the vascular ring and double aortic arch and it still wasn't diagnosed! (Ulp, you can see it is very upsetting to have a child go through that many anesthesias to have an obvious problem overlooked!). Thankfully there was a guardian angel at her side. A doctor in another state performed an angiogram after suspecting the vascular ring/double aortic arch. The angiogram clearly delineated the aberrant artery/vascular ring/double aortic arch. It was repaired soon after, and a year later the trach was removed. So, in answer to your question, while I don't know specifically about your case, I do know that in our case the condition was missed by 4 expert surgeons and at least one cardiologist. I hope that if this is a problem, that it is identified and repaired in a timely fashion. While some vascular rings may not present major problems, others may affect children so distinctly that they need trachs or other similar intervention. Re: JD in ICU Amita also got RSV inspite of getting the synagis shots. While she was at Childrens ICU all attempts at extubating her would fail and her heart rate and breathing would start failing. After 2 wks Dr. Gelfand started to talk about the possibility of putting a trach and sending her home on the ventilator. It seemed so dark and bleak then. But a chance lung function test showed an obstruction in her airway, a MRI/CAT scan showed that she had a severe vascular ring. Heart surgery followed etc. etc. One month later she was home and the drs. said it was a miracle. Hang in there, grit your teeth and just get thru the hard times. We are all praying for you. Hopefully all our collective prayers will be heard and JD will get better soon. While right now it seems a trivial thing to mention, one of the things that we did in the ICU was to play Amita's fave CD over and over near her ears after putting on her hearing aid's. She was heavily sedated but we persisted with that and getting some of her toys from home and letting it touch her hands etc esp the vibrating ones and ones that play music etc. Hang in there and help JD fight the RSV. Take Care, Deepta > > First of all, JD is getting RSV shots. Today he was having trouble breathing > and nothing was working. The doctors had bag him and he went up to the ICU > floor. I didn't know all of this and walked into his room and he was no where to > be found. When they told me, I just flipped out and almost fainted. They > called , I was just crying way too much to handle everything now. I'll let you > know more later on. > > & , parents to twins: Olivia and JD(cHArgE: Choanal Atresia, Heart > Repair, TE-F Repair, G-Tube, Trach , Hernia Repair , severe to profound > hearing loss, OFF the VENT ) 14 months , Waxahachie, Texas > > > Quote Link to comment Share on other sites More sharing options...
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