Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Kim, Since surgery is rarely done, there is just one woman that posted photos on our site (Before & After/Surgery 14 mo. old) and posted a msg to the " OlderPlag " group (you could join for more info. as well) Here is her post (I'm sure she would not mind me sharing this with you) Hope this helps. Sue: ~~~~~~~~ Hi everyone, My name is Hadley and my son is Bo. Bo is 19 months old. He went through two helmets, starting at 4 months old. The helmets did not improve his head very much at all. The plastic surgeon & neurosurgeon in Atlanta, who have followed him since the beginning, strongly suggested that we get the Cranial Vault Reconstruction Surgery. I know that some may not choose to do this because they consider it cosmetic. But, the same thing can be said about a cleft lip (actually what one surgeon said to us). The surgeons strongly believe in the psychological damage that can be done if this abnormal shape of the skull is not corrected. My son's head was rated as moderately severe. The flatness is on his back left side. He also had frontal bossing on the right side of his forehead. I was just so worried that one day he would come to me and say, " Mommy, why didn't you help me by fixing this when you had the chance? " I just didn't want to risk the emotional & psychological damage that comes along with teasing and feeling inadequate as a child and teenager. Although I fully understand why some parents choose to not do this surgery. It is emotionally taxing to see your child like this and the worries that go along with any surgery are always there. It was just the right thing for us to do in our son's situation. I read everything I could get my hands on prior to making the decision, stories from parents who chose to do it, parents who chose to not do it and grown adults that never had it done as a child. I also looked at photos from other children's surgeries. I will post my son's photos in the file section so those making this decision will have something to reference. The first surgery was to take care of the frontal bossing on his forehead. The surgery has to be done in two parts. First the front was done on October 31, 2003. The second is scheduled for April 2004. The surgery went smoothly, although it is very difficult to see your child in this type of situation, even if you know it is for the best in the long run. The surgery last about 4-5 hours. After it was over he was taken to the Pediatric Intensive Care Unit for one night. After the night in PICU, he was transferred the next afternoon to a regular hospital room on the neuro floor. For the moms out there going through this surgery - my advice is to not stay awake the entire first night like I did. The nurses, doctors & my husband all urged me to try to sleep some, but I didn't listen and stayed by his bedside the entire night without sleeping at all. It is was just so hard to see him in the bandage with all of the tubes everywhere. They are on morphine so they sleep almost the entire time, but will moan and whimper every so often, which is what kept me from wanting to leave his side. The hardest part of the surgery is the swelling. Bo's eyes were swollen shut for the first 3 days. It is very upsetting for them because they don't know what is going on and can't see at all. He would get extremely scared everytime the door would open to the room, so we asked all friends & family to not come by the hospital. We kept up with them by website updates to my son's free page on www.tlcontact.com . This is a great service and all of your friends & family will thank you for using it. You can update them as much as you want, with written accounts of what is going on and by adding photos. It was a life saver also because I set the website up (very simple to do) while my son was in surgery. They had a computer set up in the PICU waiting room w/ internet access. This allowed me to keep busy during the surgery so I wouldn't be pacing the halls the entire time. Just make sure you take your friend's email addresses to the hospital with you. We were supposed to wait in the surgery waiting area, but a friend who's daughter had been there before told us to request the PICU waiting room. The surgeons thought that was a great idea and said they would have one of the nurses call that waiting room instead with our hourly updates during the surgery. The surgery was at ish Rite Hospital in Atlanta, Georgia www.choa.org . Our surgeons were Dr. Reisner (neurosurgeon) and Dr. ph K. (plastic/craniofacial surgeon). They are excellent and have the best bedside manner - to the point that you wonder how they can actually be doctors (ha ha)! They both have children and are very involved with their patients. They took care of my husband and myself just as well. They are very caring and always want to make sure that you are well informed and feel comfortable about everything 100% of the time. Both of them are very special to us. Having surgeons that are excellent in their work & also easy to talk to with great bedside manners is very very very important. You are trusting these guys with the most precious thing in your life. Be sure they are the ones to handle such an enormous task. Shop around if you have to, and even fly out of state if needed. We actually live in Rehoboth Beach, Delaware. We just moved here from Atlanta last year. We took my son to surgeons in Philadelphia (1.5 hours from our house), some that are world renown, considered " the best " in their field. But, they just seemed very robotic and just didn't make me feel comfortable. They answered my questions, but it was just the way they did it. I felt as if my child was just another number to them and that not only did they need to be good at the actual task, but that it was important that we felt we could talk to them and ask anything. The Atlanta surgeons we ended up choosing gave us their cell phone numbers at home to call day or night if we had concerns or needed to talk while our son was in the hospital post-op. They came by each morning personally to check on him in the hospital - even on their days off, instead of letting their partner " on call " attend to us. That is what we were looking for, just the right combination. My son was on morphine the entire hosptial stay, so I don't think his pain was too bad. I slept in the bed with him every night (he started out in a crib, but we requested a regular hospital bed & they brought one and put the rails up on the side. This works great b/c you can lay there with them and it is very comforting to them when they can't see yet because of the swelling. We also took his favorite blankets from home & stuffed animals. Don't wash them before you go though, to keep the familiar " home " scent on them. We also took the little music box w/ the ocean noise that my son listens to every night while he falls asleep. Anything like that will help to comfort them when their eyes are swollen shut and all they can do is smell, feel and hear. We also took his favorite music cd's and videos. We played the videos after one of his eyes opened and he was so thrilled to see something familiar like that. He was in the hosptial for 5 days. Once at home, he did have some problems sleeping at night and was pretty clingy for about 3 months afterward. But that is to be expected. The material they used in the surgery was resorbable/dissolvable plates & screws. It is amazing, they completely dissolve in 1 year. These are fairly new and have a great track record so far. No metal hardware sitting inside your head for the rest of your life! The stitches also dissolve about 6-10 weeks later. My son goes back for his 2nd surgery in Atlanta during the month of April. I will be glad once this is all over. It has been hard to put him through this, but in the long run I think he will thank us for it. Feel free to email me with questions or reply to this message on the group, I know how hard it is to make this decision and go through this as a parent. My email is mcgregorfamily@c... Hadley > > Well, we went to see the nuerosurgeon today. He is pretty certain > that Jax has began the fusing process.. much to my disappointment. I > was hoping to hear that the radiologist was wrong and that we could > go ahead with the helmet. He said that if Jax got the helmet now, he > probably wouldn't tolerate it.. he said that Jax's head is very and I > hate HATE Saying this word " deformed " and that Jax probably wouldn't > tolerate it being pushed so hard.. and it probably wouldn't work. > So ... the plan is on Dec 8th he's having a CT Scan - where they > will rescontruct the skull in that... then we see the surgeon later > that day. He is recommending going with reconstructive surgery, and > to do it within the next 2 months while there is still growth. He > honestly feels Jaxson won't benefit from a helmet any more as he is > so severe. He said that the bossing is pretty significant as well. > 'sigh' > I have never heard of one person going through this surgery... > anyone else know of anyone?? I'd really like to know how it turned > out. Another view... something. > > Kim > mom to Jaxson 16 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 P.S. I'm so sorry to hear that you may be faced with making this difficult decision. I'm sure you will do your research and do the very best for Jaxson. I'll say a little prayer for him. Sue Colin F., 13 mos. old STARband grad 9/04 Brachy > > Well, we went to see the nuerosurgeon today. He is pretty certain > that Jax has began the fusing process.. much to my disappointment. I > was hoping to hear that the radiologist was wrong and that we could > go ahead with the helmet. He said that if Jax got the helmet now, he > probably wouldn't tolerate it.. he said that Jax's head is very and I > hate HATE Saying this word " deformed " and that Jax probably wouldn't > tolerate it being pushed so hard.. and it probably wouldn't work. > So ... the plan is on Dec 8th he's having a CT Scan - where they > will rescontruct the skull in that... then we see the surgeon later > that day. He is recommending going with reconstructive surgery, and > to do it within the next 2 months while there is still growth. He > honestly feels Jaxson won't benefit from a helmet any more as he is > so severe. He said that the bossing is pretty significant as well. > 'sigh' > I have never heard of one person going through this surgery... > anyone else know of anyone?? I'd really like to know how it turned > out. Another view... something. > > Kim > mom to Jaxson 16 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 her email is mcgregorfamily @ comcast.net (no spaces) > > Well, we went to see the nuerosurgeon today. He is pretty certain > that Jax has began the fusing process.. much to my disappointment. I > was hoping to hear that the radiologist was wrong and that we could > go ahead with the helmet. He said that if Jax got the helmet now, he > probably wouldn't tolerate it.. he said that Jax's head is very and I > hate HATE Saying this word " deformed " and that Jax probably wouldn't > tolerate it being pushed so hard.. and it probably wouldn't work. > So ... the plan is on Dec 8th he's having a CT Scan - where they > will rescontruct the skull in that... then we see the surgeon later > that day. He is recommending going with reconstructive surgery, and > to do it within the next 2 months while there is still growth. He > honestly feels Jaxson won't benefit from a helmet any more as he is > so severe. He said that the bossing is pretty significant as well. > 'sigh' > I have never heard of one person going through this surgery... > anyone else know of anyone?? I'd really like to know how it turned > out. Another view... something. > > Kim > mom to Jaxson 16 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Kim I'm so sorry to hear this. I was hoping they could do another band on Jax. Please know that we are all here for you if you need to just vent or so. Give Jax a big ((hug)). Sandy Willow's Mom > > Well, we went to see the nuerosurgeon today. He is pretty certain > that Jax has began the fusing process.. much to my disappointment. I > was hoping to hear that the radiologist was wrong and that we could > go ahead with the helmet. He said that if Jax got the helmet now, he > probably wouldn't tolerate it.. he said that Jax's head is very and I > hate HATE Saying this word " deformed " and that Jax probably wouldn't > tolerate it being pushed so hard.. and it probably wouldn't work. > So ... the plan is on Dec 8th he's having a CT Scan - where they > will rescontruct the skull in that... then we see the surgeon later > that day. He is recommending going with reconstructive surgery, and > to do it within the next 2 months while there is still growth. He > honestly feels Jaxson won't benefit from a helmet any more as he is > so severe. He said that the bossing is pretty significant as well. > 'sigh' > I have never heard of one person going through this surgery... > anyone else know of anyone?? I'd really like to know how it turned > out. Another view... something. > > Kim > mom to Jaxson 16 months Quote Link to comment Share on other sites More sharing options...
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