Thursday 13 May 2010

All or Nothing

Today Noah finally had an appointment with a Dr that we have waited over a year to see -the spine specialist from Melbourne. For years Noah has had scoliosis, but over the past 12 months it has gotten a LOT worse with him massive growth spurts because of him going through precocious puberty.

We have done all that we could to keep his spine mobile - putting rolls under him when laying on his side, positioning him as well as possible, using the second skin body splint (which he grew out of way too fast and hasn't worn for around 8 months or more now). No matter how hard we tried, we couldn't slow the curve down.

I hate looking at the curve and hate thinking about how much of an impact it haves on Noah's health and how uncomfortable it makes him. Before our appointment today Noah had a spine X-ray. It's one thing to see the curve in Noah's spine when you dress him and hold him, but seeing it on an X-ray just makes it seem so much worse.

After the Dr saw Noah and looked at his X-rays he said that really for Noah it was 'all or nothing'. 'All' meaning a very major operation to place steel rods in his spine to straighten it up or 'nothing' meaning just that - to leave things how they are.

He said that the operation is huge and very painful and that it would be very risky and wouldn't be sure if Noah would actually make it through the operation and if he did he wasn't sure whether he would cope with things after the operation with the risk of aspiration etc.

If we did do the operation it would mean a lot of pain and he wasn't sure that the gains were worth it. He would have a straight spine, but it wouldn't necessarily lengthen his life or give him a better quality of life, but may do the opposite to that because of the pain he would have to go through.

It's a very hard thing to listen to a Dr tell you these things, although you already know it. I know that Noah won't live long but when a Dr reminds you of this it reminds you again of that first time you are told - almost 9 years ago.

The Dr was lovely and said that it was up to us, but wanted to give us both sides and if it were up to him he would leave it. I was glad to hear that, as that is what we had thought already as we didn't want to put Noah through something like that. I just hope that the curve will slow down as his growth slows down so that it doesn't impact on his health anymore than it already is. Already we are noticing it's impacting on his lungs and breathing and causing more reflux.

On the positive side (yes there is one!) the Dr pointed out that Noah's curve starts at the top and comes back around to almost the same spot at the bottom which means he is able to sit straight and comfortably. He said if he wasn't able to sit comfortably then we would have to look at considering the operation more. When Noah is in his wheelchair you actually can't tell that he has such severe scoliosis which is a blessing.

12 comments:

  1. My heart aches for the difficult choices you and your husband are faced with concerning your beautiful son. I can tell that although his challenges were unexpected trials for you, having him in your life has made you incredible people, strengthening you in ways you probably didn't realize you could be strengthened and that he's brought a lot of love and some of the Divine into your home. Sounds like he's as lucky to have you as you are to have him. He must have an incredible spirit and testimony for the Lord to protect him as much as He has. I wish I could meet him! I also wish you the best of luck as you determine which path to take--those choices are hard but thank heavens we've got prayer to help us through them!

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  2. Oh so tough for you to see that and have to make such tricky decisions. Glad this doctor was a nice one. Thinking of you
    xx

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  3. Oh Lisa, it is so very hard and I truly understand how you are feeling as have been there and got the t-shirt as the going says. It is a very hard choice but am sure you will make the right one for Noah as we made ours for Megan. Thinking of you and loads of hugs to you all.

    Gisela & Angel Megan xxx

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  4. Thinking of you all Lisa....I'm sure you will make the best decision that you can based on what you know. Love to Noah and all your beautiful boys....oh and a like to Aaron I guess!

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  5. So pleased the Dr was so good and gave you all the options. I hope that you are right and that his growth spurt and the scoliosis slow down!

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  6. Gorgeous photo of Noah hun.
    Well done - you should frame this one. Big hugs to you - what an awful choice you had to face. I feel for you guys.
    xxx

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  7. Lisa,
    what difficult decisions you have both had to make over the last 9 years, can't begin to imagine, i'm sure it doesn't get any easier either, must be heart wrenching, seeing your beautiful Noah in pain, or possible pain, you are an inspiration to me and many, I am often in awe as i read your blog. thinking and praying for you as i know you guys will make the right decision x

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  8. I'm glad the dr was good when so many have the worst bedside manner, esp when dealing with something as delicate as Noah's spine. The xray really emphasises the extent of the scoliosis eh.

    It's nice that he agreed with what you knew inside was the right decision to make.
    xx

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  9. It's a tough call knowing what to do sometimes! At least the Dr was great and gave you all information and even giving his opinion of not to do surgery where some would be more keen to do it just because they can! Hope things do slow down and do not get too much worse for Noah.

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  10. I know you've said about it before but i didnt realise how bad it was until i saw the xray. Such tricky decisions to make for Noah. You guys do a great job. And the photo at the bottom is just divine. Lovely

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  11. oh wow Lisa it has gotten bad. hopefully it will calm down now he's had all that growing...not fair to hear what the options are!!

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  12. Difficult choices for you guys must be the norm after almost 9 years! Seems to me that you have made all the right ones so far and I'm sure you will again. I'm certain you will be blessed to know which path to choose and will have peace of mind when you make that choice.

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We are so grateful for everyone's love and support, and appreciate your comments xoxo

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