Emerson's upcoming plan is:
July 13th: Surgery to remove the Magec rods and attach the Halo Traction.
She will stay in the hospital for 6 weeks while the Halo Traction is attached.
August 24th: Surgery to remove the Halo Traction, one vertebrae removal and fusion, and Shilla rods inserted.
She will stay for about 4 days after this surgery.
If the hook on the bottom of her rod migrates all the way through, the plan will be the same, but it would happen immediately. There is no way to tell when that will happen. All we know is that is has moved more.
We started the week with a virtual meeting. Dr. Luhmann knew I would have questions 🙂 I had read his blog posted about both procedures multiple times, had joined a new halo Facebook support group and spent hours reading about others' experiences with these procedures. Thank goodness for support groups!
Her magec rod is maxed out. He could try to lengthen it one more time in August, but he didn't sound very hopeful that it would work. There is also the problem with the bottom hook migrating. If it does migrate through it will be uncomfortable (hopefully not hurt). We would still rather that not happen. So we chose to go ahead and schedule the next steps, knowing it would take some time to get on his schedule. We are happy with the timing because we would really like to let her get out of the house and enjoy some summer before being stuck in a hospital.
The first surgery will be to remove her current magec rods and then attach the halo traction. He will use the same scar from her past surgeries and acted like it would be easy to remove the hooks and rods even if the bottom one is still partially migrated through the bone. The halo is attached to her head with pins (screws). It will be attached to weights that pull upwards and reduce gravity on her spine. During this she will have a wheelchair and walker. The weights will be slowly increased during her stay, but reduced to 5 pounds while she sleeps. Optimal weight is half of her weight. She will do therapy each day, will walk on the treadmill for 45 minutes, and get to participate in other activities with the other patients. They currently don't have another halo scheduled, but hope to so she will have a buddy. The details on who can stay, where they stay, and when visitors can come is all up in the air because of Covid. So currently only one adult is allowed to stay with her and they can't have visitors. We are hoping that changes before July, because the activity room would also be closed.
He said to plan on 6 weeks but that sometimes the best correction could be made by 4 weeks. It is important that the halo improves the angle of her spine because that will allow him to hold the correction in surgery. He mentioned that the correction made during this surgery would be the straightest her back will ever be. They will take x-rays throughout the stay and she will get a CT scan towards the end of the 6 weeks. That allows him to make a 3d print of her spine and plan the surgery.
The details of the removal/fusion/Shilla surgery will be talked about after the CT scan and we see how well the halo has worked. The general plan is to remove the triangle shape vertebrae that is causing the larger curve, which is the main problem. He will then fuse the above and below vertebrae together. That stops the growth of those vertebrae, but allows the rest of her spine to continue to grow. She will gain some height during this surgery. He places pins around that fusion with rods on both sides. Then screws on the top and bottom and somehow that allows the rods to "grow with her spine." Check ups after this would be 6 months to a year.
Emerson is older this time and remembers a lot about the last 2 surgeries. She has been through so much, with 9 casts, 3 braces, 2 magec surgeries, 12 times under anesthesia, and more x-rays than I can keep up with (thankfully some of these have been with the low dose radiation machine). She is tough. She was really quiet and worried when we showed her the halo traction. We have looked at many pictures and videos of other kids and eased her worries since they look happy. She knew another surgery was coming and her concerns were, will I get taller and will everyone where their green shirts again.
We appreciate all the prayers our sweet girl and her medical care team can get.
July 13th: Surgery to remove the Magec rods and attach the Halo Traction.
She will stay in the hospital for 6 weeks while the Halo Traction is attached.
August 24th: Surgery to remove the Halo Traction, one vertebrae removal and fusion, and Shilla rods inserted.
She will stay for about 4 days after this surgery.
If the hook on the bottom of her rod migrates all the way through, the plan will be the same, but it would happen immediately. There is no way to tell when that will happen. All we know is that is has moved more.
We started the week with a virtual meeting. Dr. Luhmann knew I would have questions 🙂 I had read his blog posted about both procedures multiple times, had joined a new halo Facebook support group and spent hours reading about others' experiences with these procedures. Thank goodness for support groups!
Her magec rod is maxed out. He could try to lengthen it one more time in August, but he didn't sound very hopeful that it would work. There is also the problem with the bottom hook migrating. If it does migrate through it will be uncomfortable (hopefully not hurt). We would still rather that not happen. So we chose to go ahead and schedule the next steps, knowing it would take some time to get on his schedule. We are happy with the timing because we would really like to let her get out of the house and enjoy some summer before being stuck in a hospital.
The first surgery will be to remove her current magec rods and then attach the halo traction. He will use the same scar from her past surgeries and acted like it would be easy to remove the hooks and rods even if the bottom one is still partially migrated through the bone. The halo is attached to her head with pins (screws). It will be attached to weights that pull upwards and reduce gravity on her spine. During this she will have a wheelchair and walker. The weights will be slowly increased during her stay, but reduced to 5 pounds while she sleeps. Optimal weight is half of her weight. She will do therapy each day, will walk on the treadmill for 45 minutes, and get to participate in other activities with the other patients. They currently don't have another halo scheduled, but hope to so she will have a buddy. The details on who can stay, where they stay, and when visitors can come is all up in the air because of Covid. So currently only one adult is allowed to stay with her and they can't have visitors. We are hoping that changes before July, because the activity room would also be closed.
He said to plan on 6 weeks but that sometimes the best correction could be made by 4 weeks. It is important that the halo improves the angle of her spine because that will allow him to hold the correction in surgery. He mentioned that the correction made during this surgery would be the straightest her back will ever be. They will take x-rays throughout the stay and she will get a CT scan towards the end of the 6 weeks. That allows him to make a 3d print of her spine and plan the surgery.
The details of the removal/fusion/Shilla surgery will be talked about after the CT scan and we see how well the halo has worked. The general plan is to remove the triangle shape vertebrae that is causing the larger curve, which is the main problem. He will then fuse the above and below vertebrae together. That stops the growth of those vertebrae, but allows the rest of her spine to continue to grow. She will gain some height during this surgery. He places pins around that fusion with rods on both sides. Then screws on the top and bottom and somehow that allows the rods to "grow with her spine." Check ups after this would be 6 months to a year.
Emerson is older this time and remembers a lot about the last 2 surgeries. She has been through so much, with 9 casts, 3 braces, 2 magec surgeries, 12 times under anesthesia, and more x-rays than I can keep up with (thankfully some of these have been with the low dose radiation machine). She is tough. She was really quiet and worried when we showed her the halo traction. We have looked at many pictures and videos of other kids and eased her worries since they look happy. She knew another surgery was coming and her concerns were, will I get taller and will everyone where their green shirts again.
We appreciate all the prayers our sweet girl and her medical care team can get.
Oh Em, I will wear my green shirt for sure. I will be thinking about you and praying for you and the family ever day! If they allow visitors I will come and hangout with you. I love you Emerson and you are a very strong little girl. You got this! Love, Ms. Cortney
ReplyDeleteI'll be wearing my green shirt and bracelet and I'll be praying for you and all the medical team.
ReplyDeleteYou are an awesome girl. Love that smile