Rough day at the doctors!

@Thoroughrob (11750)
United States
January 19, 2009 10:17pm CST
We went to Akron today, to some new doctors for Bryan. They are telling us Bryan needs the rods put in his back now or he will never get them. They said his scoliosis is bad enough that we do it now or forget it. If we do nothing, it will progress and start shutting down his organs until he will no longer be able to breathe and put pressure on his heart until it gives out. The surgery will be very risky due to the fact that it is so bad. Infection being the biggest risk. The doctor sent us home to let it sink in and for us to make a decision. He would like us to make it within the next couple of weeks, so that if we are going to do it they can get the ball rolling with all the appointments that he needs before hand. His life is in our hands, literally. Please pray that we make the correct one. I am really struggling with this one. I am scared to death!!
3 people like this
15 responses
@dragon54u (31638)
• United States
20 Jan 09
I sympathize with you! I have a 28% curvature that has gotten worse as the years went by. I'm 54 now and when I was 18 the docs wanted to put a rod in my back. I chose not to have it and I'm not sure I made the right decision because I can only walk for a couple minutes before it hurts really bad. But back then the surgery wasn't nearly as fine-tuned as it is now so I think I did the right thing. Have you had a second opinion? His curvature must be pretty severe for it to eventually affect his organs. I think if you get the opinions of several doctors and they all agree, you should probably do it. Will he be able to walk after the surgery or still be in a wheelchair? I will pray for you, that you make the right decision. It must be very painful and frustrating to hold the life of your child in your hands. I can't imagine what the pressure on you must be. Of course you're scared! Take some time, talk to other doctors, research the surgery and scour the internet for people who have had this surgery done and see how it affected them.
1 person likes this
@Thoroughrob (11750)
• United States
20 Jan 09
Thanks so much. He has a curve at the bottom of the back that you cannot see without xrays. It twists in instead of out. It is at 100%. The other doctors never explained that, and all the doctors and therapists, kept telling us that they could not see it being as bad as the doctor before kept saying. We did go for a second opinion and that doctor as well said not to do it. This one, showed us what he seen and how he measured and why no one else could see it just by looking. He spent an hour with us. I just wasn't quite prepared for the now or never option! That was a shock.
2 people like this
@dragon54u (31638)
• United States
20 Jan 09
I can't quite believe the now or never. Maybe you should wait a bit and see what develops? You'll all be in my prayers.
1 person likes this
@Thoroughrob (11750)
• United States
17 Feb 09
It is at 100% and the most that they usually correct is 60%. If we wait, they will not touch him and no other doctor will after it reaches 120%, which they are pretty sure it will reach this year. We have scheduled surgery for March 25.
1 person likes this
@Lakota12 (42684)
• United States
20 Jan 09
OMG what a dission to make and I know you will make the right one!. I know if it was me I would go for the rods so nothing shuts down! what pain he would and will be in. my prayers and energies go out to the whole family hugs and blessings
1 person likes this
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much!!
@Lakota12 (42684)
• United States
17 Feb 09
you are most welcome ;-)
@eaforeman6 (8983)
• United States
20 Jan 09
I certainly will pray for you and your family. I am praying for a miracle and asking God to help you. There is great power in prayer and I know that you will have many from your good friends here at mylot...
1 person likes this
@Thoroughrob (11750)
• United States
20 Jan 09
Thanks so much!!
1 person likes this
@DonnaLawson (4032)
• United States
20 Jan 09
I have never been in a situation like that and pray to God that I never am.. I am also very sorry to hear this as it is heartbreaking for your family.. I do pray for the right decision to be made, but it sounds to me like the surgery needs to be done and done soon.. I would not even think about it until I had every person that I knew praying for him and his speedy recovery.. You can log onto Guidepost.com and get him on a prayer list so that people worldwide will be praying for him.. I do believe in prayer and I believe God wants the best for us, but I also don't understand why these things happen.. I will keep your family in my prayers, I pray for the right decision and for a safe speedy recovery.. Please do keep us updated..
1 person likes this
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much! Surgery is scheduled March 25.
@KarenO52 (2951)
• United States
20 Jan 09
I've had experiences in both Akron General and Akron Childrens hospitals, and the doctors and staff as well as the hospitals are the best I've ever seen. Your son will be in the best of care there, I truly believe. I was there as a nursing student, and was able to see first hand the care of children and babies with very serious medical conditions. My prayers are with you.
1 person likes this
@Thoroughrob (11750)
• United States
20 Jan 09
Thanks so much. I really liked the Doctor and he really seemed like he was well qualified and treated my son sooo good. They included him and took their time with him. Both doctors came highly recommended. The doctor we did have, did not think he needed to talk or show us anything, just tell us what was needed and we should just go with it. Then part of the time, he would tell us things and tell us the next time that he didn't. We tried to change doctors, but no one close would take him, as he has CP.
1 person likes this
@CatsandDogs (13964)
• United States
20 Jan 09
I'm so sorry Thoroughrob. It seems that you're going through a real rough time too. For someone on the outside looking in, I have to say I would have to go through with the surgery because, as it is now, Bryan stands no chance but with the surgery, he has a chance. So that said, I'd go through with the surgery so to give him that chance at life. Even if he doesn't make it, God forbid! you gave him that chance that he needed. God will take him home when it's Bryan's time and not a moment before then. What ever is meant to be, will be regardless of how or what we do. When it's Bryan's time, it's Bryan's time meaning, when God has made his bed in Heaven, that's when He will take him. I hope I'm making some sense here for it's hard to explain on here. Besides, I'm sooooo depressed myself and getting words to come to my head.... yeah. God Bless You and Your Family!
1 person likes this
@Thoroughrob (11750)
• United States
20 Jan 09
Thanks, we knew there was a good possibility that they would want to do the surgery. The other doctor wanted to, but he would not talk with us, would not explain things. He was in and out of the room in less than 10 minutes. He never did what he said and we went to another doctor that said it wasn't bad enough a year ago. Now we go to this one and he sat down showed us the xrays, explained where the curve was, compared them to others that were not quite as bad, and was upfront with us. We had no idea that we were going to be in the situation that it is something that needs done almost immediately. It was just such a shock. He seemed to be very thorough and took the time to explain things. He even knew when to stop and tell us to go home and soak it all in and give him a call in a couple of weeks. That way we have time to think of questions and we can have a family meeting of how things should go. I really liked him and he seemed very good. It is just so scary!!
1 person likes this
• United States
22 Jan 09
Wow what a hard decision to make for your son. I just said a prayer for you and your care giving team including the doctors to help you make the right decisions by giving you all the correct information. I know how hard that hard of a decision is to make. I will be here for you. Watching someone you love being so bent over like that must be so bad. Is he in any pain from his scoliosis? Is he prone to infections? Is there anyway to look up the infection rate on surgeries for that hospital? What is the recovery rate for that surgery? Will he have to go into a rehab or will he be able to come home? Will this surgery help his quality of life? Is he a code or no code is the worst would happen? These are questions that I have come up with. I hope I have not over welmed you. I will keep you in my prayers. If you want you can PM me. Hugs teapot
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much. The thing is he is in a wheelchair and does tend to lean forward, but if reminded, can sit up. The infection rate is very high for this surgery. It will take up to 6 months for a full recovery. It also has very high risks of nerve damage, neurological damage, which could paralyze him or make it so that certain organs do not work right. It will take the pressure off of his organs. Keep us in your prayers please. His surgery is scheduled for March 25.
1 person likes this
• United States
7 Mar 09
Through I am glad they are going to get it done so quickly. Does he understand what is going to happen to him? In some whys I am sure you wish he would not understand because he would not be afraid and then other ways you do not wish your son to be that disabled. I have said a lot of prayers for all involved including the doctors to guide them. good luck my friend and keep us posted.
• United States
17 Feb 09
I will pray for you that everything works out for the best! I can't imagine being put in a position like you have. Best of luck and I will keep praying for you!
@Thoroughrob (11750)
• United States
17 Feb 09
Thank you so much!! Keep praying, his surgery is scheduled for March 25.
@dana234 (2116)
• Spain
21 Jan 09
You must be going through hell at the moment. What a terribly difficult decision to make! I wish I could help. Unfortunately I can only send you my support. Sincerely I don't know which decision I would make if I was in your situation. I SUPPOSE I would have him operated. If you don't and he gets like you described it here you might never forgive yourself for not having tried every possible option. I'm so sorry that you're going through this. I'm a mother and I can imagine how you must feel. Rest assured that I will pray for you and your son. XXX Dana
@Thoroughrob (11750)
• United States
17 Feb 09
We have to try the surgery. I could not live with myself, knowing that I did not try, and watch him suffer. Thanks so much for your support.
@winterose (39918)
• Canada
21 Jan 09
oh I am so so sorry, I wish you both all the best, please keep us posted. You both are in my prayers.
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much!! We are scheduled for March 25, but that is subject to change.
@hildas (3031)
21 Jan 09
My thoughts are with you now. I will pray tonight for your family. You will make the right decision, do not worry. I do not know the history but my daughter has slight curvature in her spine, I have never been told it is Scoliosis. The rods and things these days all are great new ways. You are giving Bryan a chance and it is good he can get this where you are. I really do not know all your full story but I am thinking of you now. Take care.
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much! Bryan also has Cerebral Palsy. We had a Dr. that did not explain things to us, and did not tell us how bad it was. We seen these new doctors and they really threw a curve at us.
@anklesmash (1416)
21 Jan 09
If i had the condition i would have the rods put in my back because i would try anything to increase my life expectancy.
@Thoroughrob (11750)
• United States
17 Feb 09
We are having them put it but the odds are stacked against him. Please pray things work out!!
@Debs_place (10525)
• United States
20 Jan 09
I don't see where oyu have a choice...no surgery and it will kill him. Infection can be treated with anti-biotics. I feel awful for you, I could not stand seeing my kid in such pain and facing such surgery but considering the alternative - there is no much of a choice.
@Thoroughrob (11750)
• United States
17 Feb 09
I guess we really did not consider it a choice either. The big thing is that the odds are stacked against him either way.
@lingli_78 (12844)
• Australia
20 Jan 09
i'm so sorry to hear about what is happening to bryan... it is really a very tough decision to make... but i think it is still better to give it a go rather than to give up at all without even trying... at least bryan will still have a chance to live if you go with the operation... i will pray for you and may God gives you the strength that you and your family needed during this difficult times... take care and have a nice day...
@Thoroughrob (11750)
• United States
17 Feb 09
Thank you so much, we have decided to do it, not that it makes me feel any better about it. Keep praying will you?!!
@JoyfulOne (6242)
• United States
20 Jan 09
Oh my goodness, that's just so scary for Mom AND for Bryan! My prayers will be with you all throughout this. Poor little guy has been through so much already, my heart goes out to him and to you too. Being a mother isn't easy sometimes, but you are the best Mom Bryan could ever have asked for. In my opinion I think that's why God gave him to such a loving mother as you. I know it's hard, but you will make the right decision as you weigh all the factors. I put him on my prayer list, as well as you.
@Thoroughrob (11750)
• United States
17 Feb 09
Thanks so much!! The words of encouragement really helped. Keep praying, we have scheduled surgery for March 25.