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Need to make decision on surgery for 10-year-old child need advice from others

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  • #16
    Thank you for your message

    Hi, CurvySAT05
    I'm happy to talk with anyone who wants to give me some advice. I need all the help I can get in making the right decision. I haven't talked to anyone who themselves has undergone this surgery. Just parents whose children have undergone the surgery. You would be giving me a different perspective. I gather that despite the pulmonary problems you had that you are glad that you had the surgery and that your scoliosis is now corrected. I know what you are saying and I know in my heart you're right. My son will have to have this surgery and the longer I wait he is put at more of a risk of further complications. I noticed you mentioned you had the hardware removed? May I ask why? I was wondering how much this bothers the person. Also do you still have any back pain since having the surgery?
    Linda
    Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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    • #17
      Sean did not need blood for his first fusion (yeah!) but for his 2nd he lost a fair amount. He ended up needing 4 units as well as various other blood products (platelets, etc). It actually was the only time he needed blood for surgery other than his initial CDH repair at 1 week of age, and with as many surgeries and such that he has had thats rather miraculous!

      Our surgeon in Idaho is pretty cautious with Sean. He wore a brace after every one of his back surgeries here, and after his grow rod placement was also flat on his back for 6 months. Most docs do not go that far, and after his fusion in Seattle there was no brace of any sort (yeah!!!!!). Just one more question to ask your docs about.

      I can understand feeling the need to be cautious with your son given the situations you have been through. I know that I have my own horror stories about some doctors and nurses to be sure! ONe of the reasons we like it at our home hospital is that we dont have residents. Attendings only, though there is an occasional resident they never NEVER take care of Sean. And generally speaking the partners of our docs rarely take care of him either... (maybe we are a bit spoiled, but I love it!). Traveling IS hard to do, but I am thankful that we did the few times we have. Sure, there were a few problems and we are thankful to be HOME, but I would not trade having gone either.

      I will be around this week, but the following couple of weeks may be sporadic. Sean has a couple of procedures coming up and they will be a bit dicey as to whether he comes home right away or not. He has a cardiac cath next week and the cardiologist will need to remove his central line, do some angioplasty work to open up his SVC and hopefully place a few new stents as well as some "roto rooter" work in his SVC. Then a few days later or the following week his peds surgeon is going to replace his central line but in a trickier than usual procedure in order to avoid the narrowed parts of his SVC. Thankful we have these two on his team... for sure.

      Keep me posted, and no problem with answering questions, I like to share what I can and hope that it will somehow help your son.

      Heidi
      Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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      • #18
        Heidi,

        Just wanted to wish you luck with your son's upcoming procedures. My thoughts and prayers will be with your family.

        Mary Lou
        Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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        • #19
          I forgot to tell you that Braydon did have a blood transfusion after his a/p fusion surgery as an infant and again after his VEPTR implant at age 6. It wasn't during or immediately after surgery, but by 2 days post-op, his blood counts weren't coming back to normal as well as they should. Within a couple of hours of having a transfusion, he was a completely different child. Very well on his road to recovery. Continued best wishes to you in your research. We'll be watching for updates.

          Heidi - quick note to tell you that our thoughts and well-wishes and prayers to you and Sean next week. I know you are a strong person, but worrying about him takes its toll. Know we are with you in spirit.
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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          • #20
            Hi, Cdhheidi
            I hope your son has a speedy recovery! I will keep your son in my thoughts. Take care of yourself and I hope to hear from you soon that all is well with your son.
            Linda
            Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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            • #21
              Thanks ladies for the good wishes for Master Sean... much appreciated! He is NOT looking forward to these procedures... but he also knows sometimes you dont have a choice! Will continue to check in as I have time...

              Heidi
              Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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              • #22
                Hi, Cdhheidi
                I was wondering how Sean is doing? If he had his procedures done and over with? I was looking through other posts tonight and noticed you posted for someone else today. So I thought about you guys. My son sees his pulmo. dr. this Tuesday and I'll see what he says.
                Linda
                Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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                • #23
                  Thanks for asking,

                  unfortunately STILL not done. It was postponed till this week as our surgeon was out of town last week. Wed is the the first procedure, with the 2nd being a few days later (not yet scheduled, it will depend on his recovery from the first procedure).

                  He is making PLANS on how he can trick the doctors into not doing it... he knows one of them is afraid of snakes so thought maybe he could bring a plastic snake to scare him. LOL! He IS a dynamo!

                  Have a good week!

                  heidi
                  Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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                  • #24
                    Hi, everyone
                    Well, my son seen his pulmonologist today. The pulmonologist seemed optimistic about my son's lung function. He told me it wasn't uncommon for there to be a chest tube after surgery and that he probably will have some complications but that everything will be monitored and a plan of care in place this time around unlike prior surgeries. Apparently, my son cannot undergo lung function testing because my son doesn't know how to blow air in and out, etc. I asked the doctor how are they able to test lung function on an infant then? Since I read about this. He said they put the infant in a certain type of box it is only big enough for an infant and they perform the test somehow or another that way. So for kids like my son who are severely impaired they have to look at chest x-rays, has he had a lot of respiratory illinesses lately, blood gas level and he wants to check my son's nightime oxygen pulsesac. Also he ordered an echocardiogram to check his heart. I'm assuming that everything will check out okay with that. Still, though I was hoping to have more info. and a lung function test would have been good. I'm still very uncertain about things even despite the doctor's optimism. I know my son has a lot of problems after surgeries and this is a big surgery and to be honest I'm scared for him and still not sure of what to do. Honestly, there really isn't much of a choice which is what sucks the most. The good thing is that his pulmonologist is going to talk w/his spinal surgeon which helps and we'll have to meet again w/his spinal surgeon to talk about the procedure, etc. as well as get a 2nd opinion yet.
                    Linda
                    Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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                    • #25
                      I have a couple of questions about lung function? Is there an improvement in lung function after surgery? I remember at my son's dr. appt. with his pulmo that he said no. I also remember what his spinal dr. and ortho had told me that after the surgery he could be worse off lung function wise. One of the dreaded possible risks of surgery. Also I've been wondering about my son's apnea for awhile now it started a year ago. Although his curve was much smaller then 6 months ago at 40-45 degrees don't know what it was a year ago since he was not being followed by a spinal dr. The spinal dr. told me then the curve wasn't big enough to affect his lungs yet I've always wondered despite what he said. Since he had several tests to rule out other things. They said it was a central apnea affecting his brain. My son does have brain damage but he has had no trouble with his breathing all this time until about a year ago. I thought it was related to a bad respiratory illness that he had and caused damage to the lungs but this isn't the case. I guess my question is, does anyone feel affected respiratory wise by their scoliosis even though they have a small curve?
                      Linda
                      Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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                      • #26
                        Good Morning!

                        Some kids have worsening lung function after, some have improved. In Sean's case it sadly worsened, a little, as after his first fusion is when he had to go back on O2 24/7 instead of just at night. But if we had not done the surgery I truly believe he wouldnt be here anymore, so it was worth it. After his 2nd fusion it improved for a few months, he LOVED going several hours each day without the O2! How's that for a mixed bag. Is there any way for them to do a VQ scan? Sean's first VQ when he was 5 they sedated him for it so that he would stay still. (no intubation, just a mild sedation).

                        Sean has both forms of sleep apnea, and that is one of the big reasons he is on Bipap at night. About 6 months after his first fusion we went for a recheck at the pulmo's office (we live in Idaho, she is in Seattle) and found that his CO2 levels had increased, in addition to other symptoms (crabbiness, sleeping more, that kind of thing). She got him into a sleep study 3 weeks later, usual wait at that time was several months. He had a 2 night study, one night on his own, and the 2nd night with a bipap machine. The difference was astounding! He hated the machine, but after he settled down he only woke one time, and after we left the hospital after the test he told me that it was the best nights sleep he had EVER had. He started wtih the machine at home a couple of weeks later and we could not be more pleased with the results for him. Granted, he has to have a sleep study annually now, and his pressures have increased a few times over the 3 1/2 yrs. We know because of his issues that eventually he will have to be trached and vented, but we are hoping that the vent will only be at night with plain O2 during the day.

                        By the way, Sean had his surgery last week, and at this time he has no central line for the first time in nearly 9 yrs. It is an amazing thing when you have lived with something like that for so long to no longer have it! We realize it may be temporary, but we are loving the fact that we can relax, just a little bit. (he is on coumadin, so we had to be VERY vigilant about line breaks in his IV in case he bled out).

                        Hope I helped, a little!

                        Heidi
                        Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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                        • #27
                          Hi, Heidi!
                          Happy to hear from you! Terrific news about Sean! I like to hear when things go well for these kids they deserve a break! I hope he continues to do well! You know it is strange about Sean's lung function after the 1st surgery being worse and then after the 2nd surgery being better. You wonder why? One of those medical mysteries I guess. I don't know what a VQ study is ? You and Carmell are always challenging me with the medical terminology, ha! ha! You know what the funny thing is, is that I'm a medical transcriptionist but my speciality is pathology a whole different set of terminology. I tried googling VQ study to find out what it is but didn't really find any info. to help me. If you could please let me know what this study is and what it measures I'd appreciate it! I know you mentioned they need to be sedated for it so obviously they don't have to do anything physical to perform the test.
                          Linda
                          Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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                          • #28
                            This is a link that explains the VQ study pretty well.

                            http://www.uhcwv.org/pages/diagnostic/nuclearvq.html

                            In Sean's case it was done at Seattle Childrens, and we arranged for him to be sedated since we knew he would not be able to hold still for the scans. He was awake for the few minutes where he breathed in the canned air, but asleep for the rest of it.

                            He will be having another one done in April of this year so that we can compare and see what changes have happened since his first one (a little over 4 yrs ago). This time he will be awake for it, as he has become much better at cooperating when needing to hold still. Only problem is he no longer has the central line, so he will need to have an IV placed for the dye to be injected.. Oh goodness me, I had forgotten about that part! UGH!

                            Heidi
                            Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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                            • #29
                              Hi, Heidi
                              Thanks for the quick reply. I checked out your link and read it over. I don't know if the lung perfusion scan would really be applicable in my son's case since it looks like it is for detecting pulmonary embolisms. I googled lung perfusion and found a site where they mentioned the lung perfusion scan as well as a lung ventilation scan. The lung ventilation scan may be an option. Since it would tell which areas of the lungs are ventilating. They say it is even used after surgery to tell doctors how well the lungs are doing. I will give his pulmo. nurse a call about it and see what the dr. says about it.
                              Linda
                              Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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                              • #30
                                Sean's VQ actually looked at both perfusion and ventilation... Thankfully he didnt have clotting, he does have what are called blebs all over his lungs. Basically a bleb is like an overblown balloon that cant get back to its un-inflated size. In his case they are probably due to the vents he has been on due to his birth defect and surgeries...

                                What they can do is see where in the lungs the O2 is going, and where in the lungs it is crossing over to the blood stream. The first VQ he had showed that of HIS total breathing, 13% of the O2 was going to his left lung, and 87% to his right. Doesnt compare to normal people, it just shows his total. It helped us to know that his right lung did most of the work, which is one reason that deflating that lung to do a typical anterior fusion was not a wise choice. Thankfully they were able to do part of an anterior fusion without deflating thanks to our beloved peds surgeon who advocated on Sean's behalf and was there for part of the procedure to show them how to do it.

                                Heidi
                                Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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