Son with Down syndrome spinal fusion March 29

[Lura]

I just found this site, so I hope I can get some responses! My son is 12 years old, Down syndrome, and has scoliosis. His surgery is fast approaching, and I am terrified! I cannot explain it to him (he's cognitivly 4). Any one else with Down's kids with scoliosis? Any advice from anyone is greatly appreciated!

Thanks!
Lura

[nikyergen]

Lura,
I wish I could help you with your Down Syndrome situation, but I have no experience in it. My 16 year old daughter has no handicaps to deal with. She was actually able to make her own decisions about her surgery. I think it surprised the doctor and nurses that we just looked at her and said "You've been given all the facts and now you get to make the decision and we will support you in whatever decision you make."

I can understand the terrified about surgery, but you have even more stress than I do. My 16 year old daughter has surgery on 3/15. Fast approaching. We are getting prepared to leave tomorrow afternoon. We have a ranch, so it takes a lot of work round here to leave for even part of a day, let alone a week.

Be sure to read different posts. Some of them are just comforting, and knowing you aren't the only one out there. When you have a fear, just post on your original post. Someone will notice that there is a new post and will sooner or later reply.

I will be checking the posts while we are in at Shriner's Hospital in Portland. So, if you just need to talk, leave a post. I'll be looking for it. I check it on a very regular basis.

I am praying for you and your family.

'til later,
Nikki

[Lura]

Nikki,
Thank you so much for replying so fast! I was afraid I'd posted too late for anyone to respond.
I will say a prayer for your daughter and her doctors. We are going to Shriner's in Spokane, checking in on Easter Sunday by noon.
I think the most difficult thing for me is preparing Alex for surgery, there is really no way. Cutting his finger nails is major trama.
As for reading the other posts, I was up past midnight last night doing so. There are so many great postings, and a few I wasn't prepared for. I got some peace and some anxiety!
Please keep in touch and let me know how surgery goes!

Lura

[nikyergen]

Lura,
We considered using the Spokane Shriner's Hospital. The only reason we didn't is that all of our family is in the Portland area. I really enjoy reading the posts. Because, I can say "Gee, I'm a normal mom." You aren't the only one that has so many feelings going on about this surgery.

If you are worried about your son getting an IV and things like that, they will give him an oral sedative if you need them too. The hospitals are so good about that. If they don't offer it, don't be afraid to ask for one. That will take some of the trauma out of the getting ready to go into the O.R.

You may want to read our thread called "Getting Ready for Surgery." I started it, but there have been a group of moms that have joined in on it. Sometimes we write about our worries, other times we just try to laugh and visit. You are more than welcome to join in on it. There is also another forum called spinekids.com. It is pretty good too. I find that when one of the forums isn't very active, the other one is. So, I jump back and forth with them. Join in on any thread (post) that you are interested in. Everyone here is great.

I think we all pull a lot of spiritual strength from each other. As, you will see we all pray for each other.

If you have any questions, please ask, ask, ask. There is never a silly question. If you think of it to ask, it is worth asking.

I look forward to your next post. You will be amazed people are on these forums 24/7.

'til later,
Nikki

[Lura]

Nikki,

Alex doesn't tell us when he hurts (teeth, head ache, sore throat) so I spend a great deal of time guessing. I was reading the thread you recommended and you indicated that Crystal has had a great deal of back pain, what is the degree of her curve? Alex's was 27 in April of '04 and 43 in December '04. I don't know if he is in pain, but the doctor indicated he should be.

The thing I am the most nervous about is the surgery (waiting). I have a great support system, so I won't be alone. The hospital will probably kick someone out as my dad and his wife, my mom and her husband, my ex-husband and my fiance will all be waiting. I am so greatful.

Alex is my only child, so I am extreemly over-protective. This adds yet another element to my stress.

Thanks for the responses, it is really helping!

Lura

[Gail]

Hi Lura,

I have a sister who has Downs Syndrone and is 49 yrs. old. What a Blessing she has been to our family. I understand your fears and concerns and will be praying for you!

Kindest Regards,
Gail

[nikyergen]

Lura,
Crystal has a 58degree Kyphosis. She has a lot of pain, because she works so hard to stand up straight and her muscles get real sore. I was thrilled to hear you had a doctor actuallly say that your son probably has pain. So many of the doctors say these kids don't have pain from scoliosis/kyphosis. It is nice to know that there is a doctor out there that feels differently.

I have a friend that has a 23 year old son that has some handicaps and is autisic. He doesn't tell her when he hurts either. She watches his mood changes. If he gets really pushy and moody, he usually has a bad headache or is not feeling well. I've spent a lot of time with her over they years and got to where I could tell he wasn't feeling good too.

Well, today is the day that we leave for Portland. Crystal is admitted to the hospital at 1pm tomorrow, with surgery at 7:30am on Tuesday. I've slept pretty good the last three nights, however my stomach is really giving me what for this morning. I'm going to get some pepto on my way to town, mayb that will settle it.

I'll keep you posted on how surgery went and how Crystal's recovery goes. She is bound and determined that she is getting out as quick as possible. She hates hospitals and has seen to many of them, she has severe asthma.

Well, I need to get. Have things to get packed.

I'll keep you in my prayers.

'til later,
Nikki

[lorrie]

Hi Lura,
I do understand how hard it is to explain things to youngsters with cognitive problems: my daughter doesn't have Downs (she has cerebral palsy) but she does have cognitive difficulties. We find that you need lots of repitition and just to talk about things in everyday conversation (sometimes she gets upset and then we drop it and just cuddle her till she calms down) The other thing we have found helpful was to borrow a plastic spine and pelvis (life-sized - we called him Elvis) from a local hospital's physio dept. Luckily we have a friend who works there. Genevieve is not good at abstract things - you have to make things concrete for her to understand so being able to say "This is in your back" and have her feel the knobbly bits on her sister's back was a big help.
The other thing I've always done with her is to not understate how horrid things are going to be "It's going to be really nasty for a while but we'll be here to look after you and it will be better afterwards. It will help to keep you well and we've got a new stock of cuddles in specially for you".
We've always told her it's OK to be scared too.
Hope some of this helps - I'll be thinking of you.
Lorrie

[Lura]

Lorrie,

Thank you for your thoughts. Has Genevieve had surgery, or are you preparing for it? I wouldn't trade Alex for the world, he has been such a blessing. My heart is breaking knowing what is ahead of him.

There is a woman here (I live in Montana) who wrote a play called "Same Difference." The play is about people with disabilities in an inclusive environment. Alex is starring in the play this time and it is fantastic. There are children and adults with and without disabilities in the play. It puts a very positive spin on including people with disabilities in everyday life. I truly appreciate her for writing this play. My degree is in Elementary Education, so Alex has been included in regular education classes since first grade. Sorry, I am rambling!!

Lura

[Lura]

Gail,

Thank you for your kind thoughts! Alex is an amazing little boy, and the absolute love of our lives. I often say that if Alex had to be born with a disability, I'm glad it is Down syndrome. Alex loves music, appreciates every thing, is kind to everyone, and approaches every day with a smile. But you know what I mean!

Thank you for your thoughts and prayers!

Lura

[Lura]

Nikki,

You will be in my thoughts constantly, especially on Tuesday. I was telling my mom and Scott (my fiance) about Crystal's surgery and we will all be saying prayers. I hate so much that our children has to endure this surgery and I hate that we, parents, have to watch them go through it, but how great that we have this site so we can connect with others who are as scared as we are!! I am very thankful for you, Nikki! Be strong and let me know how it's going when you can.

Lura

[SarahH]

My son Trenton will be having surgery this Thursday. He is 11, hearing impaired and developmentally delayed. His curve is 77% and he doest complain about pain, yet I do know he is uncomfortable. We have explained alot about pain, what the surgery will do, and best of all... all of the fun things he'll be able to do after surgery. I have focused more on the positives, even telling him that he'll get gifts,balloons, etc... I hate to sound superficial, but he needs something to look forward to. That is how his little mind works. I'll keep you posted on what works or doesnt. Take care, and please know that your not alone!

Hugs!
Sarah

[cdhheidi]

Sarah,

Be sure to check in with the Child life department and the play room. They have some good stuff to play with, and you can choose what he would like and bring it back to the room (including videos... they have a huge selection!) until he is ready to go himself to choose. And thats pretty good incentive too... Sean loved to play pool and air hockey, and they also have a PS2 and Xbox with a fairly decent selection of games to play as well in the playroom itself.

Will be praying for surgery to go well this week....

check your PM for a note from me with my email addy....

Hugs, Heidi

[lorrie]

Hi Lura,
Genevieve has not had surgery yet - we expect to get a date any minute ( we got a letter six weeks ago telling us surgerywould be in 6 - 10 weeks) and do feel a bit like we're living on the edge of a precipice waiting for instructions to jump! Genenvieve is currently on antibiotics for a chest infection so we're just keeping our fingers crossed it clears in time!
Regards,
Lorrie

[Lura]

Sarah,

It is so nice getting replies from moms of children with special needs. The one thing I've said over and over is that the disability should be enough for these little ones to deal with, but I also believe in God, so I know there is a reason for everything.
As for the gift and balloon idea, there is nothing wrong with painting a rosier picture.
Are you going to a Shriner's hopital? We are using the Spokane unit. It's comforting to us who are waiting to have a few going through it and then walking us through it, I know that I find some comfort in the knowledge and look forward to passing on some words of wisdom as we go through the surgery.
I will pray that all goes well, and look forward to the successful news from you when your little guy is all done.

Good Luck!!!

Lura

[Lura]

Lorrie,

As I read through the threads, I see that we are all concerned with the children getting sick and having to postpone the surgery. We are at that point, as surgery is two weeks from tomorrow (yikes!) Everyone around us is sick! I am just praying an awful lot and thoroghly cleaning and disinfecting everything in site.
Getting the date is somewhat of a relief, but I cried for a month afterward, followed by 2 months where I was okay, and this month I am back to crying quite a bit once again. I am now to the point where I just really want it over, but I don't look forward to the recovery. Fortunately for me, Alex is a very mellow child who enjoys movies and snuggling with mom-mom, so perhaps it won't be too awful.
Let me know when you get a date, and I hope the infection clears up fast!!

Lura

[Carmell]

Hi Lura,

You've had great comments from the other parents. I hope you can find some peace of mind. Surgery is NEVER an easy decision.

I have some questions for you... you mentioned his curve in December measured 43 degrees... is this a scoliosis (side-to-side) curve? or a kyphosis (hunched forward) curve? or a lordosis (too much sway in the lumbar spine) curve? I ask this because a 43 degree curve is not usually an emergency situation. You have time to reconsider doing surgery, unless the curve is a scoliosis or kyphosis that is causing pressure or problems with the lungs and breathing. He's only 12yrs old. His spine probably has more growing to do.

I have a nephew who has DS. He has a severe sway/lordosis in his lower spine. He is 11yrs old and is only 4ft tall. I worry about him and his orthopedic issues, but his mother doesn't... oh well.

My son is 9yrs old and has severe congenital scoliosis (very different situation). Like I said before, surgery is always a difficult decision, but sometimes it is necessary. You need to make sure you have all your opinions straight and base your decision on the recommendation from the orthos you trust 100%. I hope the ortho is not suggesting surgery sooner than later only because its convenient for him/her.

The emotional rollercoaster we parents go through is not fun. BTDT. Still doing that. Braydon has another surgery on Monday (March 21) to lengthen the rods in his back/chest. These are technically "routine" procedures, however, its still surgery, and its still emotionally stressful. Please know that many parents here have walked in similar shoes. You are not alone. We have a collectively large shoulder to lean on - I hope you use it. Feel free to email me privately if you have any questions or concerns that you don't feel comfortable sharing here. I know there are MANY issues that go along with a huge surgery like this, especially in a child who has multiple needs. My email is boulderfam@hotmail.com Braydon has his surgeries in Salt Lake City. I know there are great docs there.

My best to you!

[Lura]

Carmell,

Hello, and thank you for your message! Alex has scoliosis. You are all more technical than I am at this point, but he has a double curve "S" and will undergo a total spine fusion. Alex wasn't a candidate for bracing, as he has
severe compliance issues when it comes to anything medical. It was decided to allow the curve to progress and do surgery once it reached 40 degrees. The doctor said waiting longer decreases the amount of correction that can be achieved. Sorry, I don't have the technical jargon down, you guys amaze me!! Alex is structurally a mess!!! He has a depressed sternum (doesn't pose any threat), knock knees (he got those from me), flat feet (often a Down trait), scoliosis (obviously), and his hips are messed up and are being compromised by the scoliosis. Believe it or not, he walks quite erect, and doesn't seem to be phased by any of this!!

You appear to have been given quite a bit on your plate as well. Do you often get the quote "that which doesn't kill you makes you stronger"? I was recently at a point where the next person who uttered this phrase was going to push me over the edge. But there is some truth to it! Alex is the love of my life, my only child, and my reason for everything I do.

All the best in this next surgery you must endure, thank you so much for the thoughts, I hope to visit more!!

Lura

[nikyergen]

Lura,
We got all our pre-op stuff done and Crystal was admitted this afternoon. We were able to have dinner with her and the hospital gave us an evening pass and tickets to take her to see Miss Congeniality 2. We had a great time, but I think we were all anxious. She is scheduled for 7:30am surgery.

I hope you are holding up okay. It is really hard. I went to sleep about midnight last night and was awake at 2:30am, finally turned on the TV about 4:30am, and finally got out of bed about 6:30am. I know part of it was sleeping in a motel, but the biggest part was anticipation.

They are fusing Crystal from T-2 to L-2. She will also have to wear a brace to 8-12 weeks. Her little sister is thrilled with that one. She has to wear a brace and hates it, and now big sister has have one too.

Anyhow, we will keep you in our prayers as you get prepared for your date.

God Bless You.

'til later,
Nikki

[lorrie]

Hi Lura,
A different phrase for you to think about (seeing the if it doesn't kill you ..... is driving you nuts).
A woman is like a teabag - you never know how strong she is until she's in hot water!
Regards,
Lorrie

[Lura]

Nikki,

I was so happy to get a note from you today. I have thought about your family and Crystal all day. How did surgery go? I am praying for all of you! I'm not suprised you didn't sleep, I'm sure I will have the same issue.

Shriner's called today to confirm and set everything up, so I was pretty worked up again today. I don't know if you read the threads from the past few days, but Alex is having a total spine fusion (from stem to stern)! Icky, icky, icky!!!! The nurse was very kind, and as I am finding with all of the medical personel, very forthright. They don't try painting a rosy picture, although they do reassure you that everything will be done to make it as comfortable as possible.

You will remain in my thoughts and prayers!

Lura

[Lura]

Lorrie,

Such a great saying! I love logging on and seeing messages, particularly from you and Nikki, as we have had the more contact. I wonder how Crystal is doing this evening? This forum is nice, because there seems to be someone going through surgery before someone else and we all benefit from the information!

Well, it's "date night", so I'd better hop in the shower! Thanks for keeping in touch!

Lura

[nikyergen]

Lura and Lorrie,
Well, we made it to the other side. It is such a relief to have the surgery over. Now, I wonder why I was so worked up over it. Crystal is doing in great. She is handling the pain well. But, the staff is right on top of her pain if it gets to be too much.

Shriner's has been great. The staff here are great and very supportive. When they brought Crystal back to her room, she was in tears. I had to step out because I started to cry and they didn't need both of us crying. Her dad was with her being strong for her. The staff reassured me that it was okay to step away like that. It has been a wonderful experience, no matter how bad I thought it was going to be.

My prayers are with you as you prepare for surgery.

I need to get back to Crystal. I'll write more later.

'til later,
Nikki

[SarahH]

Lura, I look forward to waliking through this with you.... This site and support here amazes me. Take care and I hope you enjoyed your date night! Hugs!

[lorrie]

Hi Nikki
So glad to hear you people are doing well. Prayers and hugs winging through the ether to you!

Lura,
Hope you had a great night out!

Lorrie

[Lura]

Sarah,

I am praying for Trenton's surgery. I am so sorry I haven't asked how you are, I guess I was mentally with Nikki and Crystals surgery on Tuesday. Now my thoughts and prayers are with you. Your little guy is closer to Alex's age, so I'm very curious so see how he gets through this. It appears Crystal did great!!! THANKS BE TO GOD!!.

Any way, know that I am thinking of you so very much. Keep us posted!!

Lura

[Lura]

Nikki,

You and your family are on my mind constantly this week. Your posts are very encouraging. I think it will be quite interesting to see just how little sleep a mom can function on!!

Hope to hear from you soon!!

Lura

[nikyergen]

To all:
Crystal is doing great. She sleeps well, when the nurses aren't bothering her. She got to sit up on the edge of the bed today. She said it felt good to sit upright. She isn't using her morphine pump much. She told the doctor that she would do it again if she had too because she is so happy with her correction. I think it helped her to go into this with a positive attitude and she really wanted this surgery.

Orthotics will have her brace ready tomorrow and she can possibly start working on moving around.

We are all starting to really take our turns on this. Just keep strong and positive. I wish I had more advice than that, but it seems to be the trick. Strong and Positive. Keep your faith in God.

I am praying for all of you.

'til later,
Nikki

[Lura]

Nikki,

Amen!! I am so happy for Crystal (and you)! I always say preparing for the worst will make the outcome not so bad.

Shriner's called yesterday and we got all set up. Seems very real now! I asked our family doctor if Alex could have an echocardiogram done and the results came back good today. Each little positive is so greatly appreciated.

Take care Nikki, and thank you so very much for the progress reports, it is very helpful for me.

All the best!!

Lura

[lorrie]

Nikki

Thinking about you - glad Crystal's making progress. It's so good to hear about people coming out the other side. It helps make me believe we'll get there too.

Lura,

Hang on in there. Glad the echo cardi came out OK - I know kids with Downs can have heart problems.
Our physio contacted the hospital for us yesterday and they reckon Genevieve's op will be mid-April - still no actual date yet, not even for pre op tests. at least it gives her time to get over this cough (improving but she'll have to give up the cigars before breakfast!). My husbands birthday is 13 April and he's been complaining that he's going to have to work this year (it normally falls during the Easter hols) so I've told him that he might not have to work after all if they time the op right. He doesn't think that would be a big improvement somehow! Can't think why!!.

Lorrie

[Lura]

Hi Lorrie,

I finally looked up Northumberland and now know that you live in the UK!! I've been meaning to check that out, and I finally did!! The internet is so awesome in this way!

I hope Genevieve doesn't have surgery on her dad's birthday, that would be awful! Alex doesn't have a cough, although his nose is kind of icky. I decided we will just stay home and rest this weekend, drink plenty of juice, and hopefully all will be well!! This worrying about them getting sick on top of worrying about the surgery is for the birds!

Well, I am getting anxious, but there is so much to do in the next week, that hopefully my mind will get a rest.

Nice to hear from you!

Lura