Monday, October 20, 2014

Another tough decision - Back Surgery

For months, maybe even close to a year, Brian and I have been exploring options regarding Ian's scoliosis. As with all kids who have any form of muscular dystrophy, scoliosis comes with the territory. To try to help with the progression of the curve, Ian has been in and out of back braces. I would have to say more out of them then in as when he did have movement the back brace would restrict the movement he did have. In addition, he did not find them comfortable. Brian and I felt that we would rather him have the movement, then be restricted. We have worked hard on positioning techniques to try to keep him as straight as possible, however there is only so much one can do. At his last x-ray about 4 months ago, Ian's scoliosis curve was closing in on 80%. We have known that surgery would be an option...there are two different kinds; a growth rod or a fusion. With the growth rod, he would have one surgery now and then every year have to have another one...putting Ian thru one surgery is a hard enough decision to make let alone knowing that he would have to have more. The fusion would be one surgery and done...this sounds much better to us. After seeing his primary orthopedic at Hopkins we decided to get a 2nd opinion with an orthopedic at DuPont Hospital in Delaware. The Hopkins MD wants to do the growth rod surgery where the DuPont MD wants to do the fusion. Our other option would be to do nothing and his curve would continue to grow and eventually his spine would touch his pelvis. 

On Friday, Brian and I met with the doctor at DuPont to discuss back surgery and find out exactly what he would do along with pros and cons.  We were able to have a more in depth conversation without Ian there.  Dr. Mackenzie would do the fusion from T1 to the pelvis. So Ian's incision would be all the way down his back. He would be in the PICU for 3 days and the move to the rehab unit for about 4 days. Of course this is all in an ideal world.  Getting the fusion would provide Ian with more comfort, better posture, more room for pulmonary to function, more room for GI to function, all of the above would give him a better quality of life.  The cons are him having surgery, risk of infection, risk of pneumonia or anything dealing with his breathing.  However, him already having the trache is actually in his favor. All of this being said we have scheduled surgery for March 31st. We would love to get it done sooner, however we will not electively put Ian in the hospital during flu season and Dr. Mackenzie is already booking into January or February. As I told Dr. Mackenzie, we feel good about everything when we are talking with him however once home over time we 2nd guess ourselves.  He said this is all very common.  He said most families who have kids with SMA which is the closest to what they can compare Ian to have not had regrets about doing it. 

We do know that many may think that doing this kind of procedure on a child as sick as Ian with an unknown life expectancy is cruel…we ask that you not judge and support us in this decision as it will be hard on everyone in our family. All Brian and I have ever strived for is comfort and quality of life for Ian and if doing this surgery is going to help with both then onward we will go.

The x-ray on the left is from Ian's appointment about 4 months ago while the one on the right is from 6 months before that. You can see the difference and how the curve is growing.


chickma said...

What a terrible decision to make but now that it is done be at peace with the choice and leave the rest to the Dr and to our higher power that ultimately trumps all our earthly plans. You are amazing parents to Becca and Ian. Find confidence in that and know that your family and friends are with you every step of the journey.

Ang said...

Marci, I know how hard this decision has to be for you. I can identify with some of it as Chloe's curve is sitting at 48-50 degrees and they are recommending the growth rods if it progresses above 50. At our appt yesterday they said there is a new procedure like growth rods, but using magnets to lengthen as they grow so to avoid the repetitive surgeries. Just another option to be aware of. On another note, my husband has had a fusion of the L5-S1 and gained years of relief from it, and says the surgery was entirely worth it. I of course support you in whatever you believe to be best for your son. You are all in my thoughts.

Keira Silberstein said...

I cannot imagine having to make this kind of decision. Rest assured, you are doing the best thing for your son. Have you considered trying chiropractic while waiting for the surgery? It may give him some relief, and it's drug free, so you don't have to worry about interactions with his current meds. We can help you find a local chiropractor, if you need help.

Anonymous said...

Tamara Jayne Flax No one should judge you and your decisions! Stay strong. These decisions are yours and Brian's - no one has the right to judge.

Debi Gersh Van Camp Xoxo

Heather Schmidt Young Best of luck to Ian! All anyone can ever do is what they think is best. Unless they have walked in your exact shoes, nobody should have anything but supportive words of encouragement for you all.

Franny Lerner Marci, no one has walked in yours & Brian's shoes. You both do what you feel is best for your child, and it is for no one to judge. I say, you are an inspiration to so many & awesome parents. Good luck with your decisions.

Jill Pelovitz David has always said that our job is to give Nadiya the best quality of life she is capable of having. I think that is a very good way to look at it. We can't "fix" her condition but we can make her quality of life the best possible. Only you and Brian know what that is for Ian and as his parents that is what you will do. No one lives in your shoes so they have no right to judge. I support your decision and pray for success and for your strength during this time.

Franny Lerner and btw, happy belated anniversary to you & Brian

Laurie Rubin Marci Weinberg Scher, you and Brian are the parents and you guys know what it best for your children. No one has a right to judge you or anyone else with health/medical decisions made for loved ones. Wishing you and your family the best with whatever treatment you decide for Ian.

Jennifer Paradise Baker you are both so brave, your decisions are well thought through and you will get all of the support you need! God Bless all of you!

Cheryl Levine Snyderman Once again you guys have made the right decision. I don't know how you keep doing it, but you do! :-)

Sherie Bober Rubin DuPont is an excellent hospital. I'm sure he will do great

Gail Gabby Katon None of us could ever question the decisions you make for your babies. Only Mama knows what is right! Good luck!!

Anne Polakoff King Marci, you continue to be my hero. How dare anyone judge you without walking a mile in your shoes. You and Brian are amazing with how you handle your everyday challenges with such caring and dignity.

Marci Weinberg Scher Sherie Bober Rubin, I have spoken with Mike and seen him numerous times over the past few months.

Anonymous said...

Donna Lithgow Stollings When you're making decisions for someone you love, it is so hard to not second guess yourself. But you went to a really good hospital and you're following their guidance. Don't ever let anyone make you doubt yourself. <3

Karen Schmidt McClelland amen! what everyone else said!!

Harry Blacker As always Marci, yours and Brian's strength and courage and openness is amazing and inspiring. Our love and prayers are always with you all. God bless you and your family!!

Ezra Aaron Buchdahl You have gone about this difficult decision the right way. No one has the right to judge you. You have always done what you thought was in Ian's best interest. My thoughts and prayers are with you all.

Marlene Ettlin Thinking of all of you. You are an amazing family ❗❗❗

Tina Goldstein Moss No judging, ever.

Carrie Levin Weitzman Sending lots of love and hugs!!

Lauren Agetstein No one should judge what they don't understand. No judgement here with me. I am not one to judge. I never want anyone to judge me and my situation. You do whatever is in your sons best interest.You and the rest of the family are in my thoughts.

Audrey D Kline As with all of your choices along the way, you've done beyond an incredible job taking care of your family and doing what is best for your family. No judgement needed other than you are terrific.

Lawrence Himelfarb If anyone judges, f them. Happy anniversary to us 😀

Carye George Everett Seems like a great decision with a lot of good things to come out of it.

Lesley Winer Bogash I just read your post only you and your husband know what decision you feel makes the most sense for Ian and your family if anyone dares to judge you on that they are not friends you need in your life just my two cents!

Deana Munchow Our hearts are with you as you make this difficult choice.

Alicia Katznelson Broth Marci, no one worthwhile is going to judge you EVER to be anything but the most loving, devoted, patient mom there is!

Mitchell Cooper Sending lots of love your way.

Kathleen Baumgartner Larsen Love with you and Brian alway.

Jill Granek Suffel I love u <3

Monique Erdos-Gertner Always support. I'd do the same. Anything to make life comfortable.

Jessica Lynn Any decisions we make as parents are difficult. You all know Ian better than anyone! Total support for your family! Praying!

Annelise Sullivan If it's right for your family, it's the right decision. My prayers are with the surgeon's hands come March.

Samantha Gitli Schaefer it's always the right decision when it's made with love and best interests at heart. You and Brian are incredible parents who only look for ways to give both of your children the best life possible. I hope you find peace in your mind and heart with this and all future decisions.

Linda Butler ❤

Steve Lunenfeld Thanks for sharing. I am in awe of the grace in which you go about your daily routine with your family. Thoughts and prayers with you and Ian.

Mark Brodinsky You are making the right call. 100%

Michelle Kampler Schwartz <3

Carol Zika Blessings on all of you.

Arlene Brown Stein always thinking of you

Sheila Kaplan Weinberg Marci you and Brian have made good decision all of Ian life. If anyone has anything to sayl et them come and stay at your house for 24 hours and let's see what they have to say then

Sheila Kaplan Weinberg you have our support all the way. Love you all

Kellie Holmes I wish I had a tenth of the strength you have.