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View Full Version : Impending expandable rods surgery



CrystalC
07-30-2007, 12:33 PM
I'm the mother of four children, the youngest a special needs child. I myself was diagnosed with scoliosis in my early teens, but luckily the progression stopped on its own with no bracing or surgery needed. I have one shoulder alot lower than the other and am not even sure of the severity of the curve.

I write today though about my youngest son who with his last x-rays measured at about a 68 degree thoracic curve, not sure of the lower compensation curve. We did the whole bracing thing since he was about four or five with no positive results. He will be nine now September 2'nd and his surgery is scheduled for September 10'th. He's having his MRI done tomorrow. He has a chromosonal abnormality which has made him globally delayed. There is nothing he is age-appropriate with. He is legally blind, has mental retardation, has failure to thrive, leukopenia (chronic low white blood count). He eats no solids (food and oral aversions) so he drinks a bottle during the day and is g-tube fed at night. I'm worried most because he doesn't speak and has no way of telling me how he's going to be feeling after surgery and during his recovery time at home. He didn't walk until he was five and has had corrective ankle surgeries on both feet. He is just now starting to do his version of running. I'm worried this surgery is going to set him back immensely with his motor skills. His balance and depth perception are not very good now as it is and I'm afraid that after his surgery he will not feel comfortable enough with his new body and brace to want to walk.
I know he's not a typical child and recovery time is different for everyone, but how long (estimated) should I expect to see him make an effort to get up out of bed and begin to get back to "normal". How long also is pain expected to last and how severe is it. I want my son's pain to be managed correctly but with him not being able to speak I worry it won't be.

I remember when he was ten months old and he had his open heart surgery, him trying to cry while intubated and they told me they had given him the most pain meds they safely could. He just didn't seem to respond well to the pain meds and wouldn't stay sedated. They tell me with this surgery they will keep him sedated in the ICU for the first couple of days, but I'm dreading reliving seeing him in such discomfort. Are there pain meds that worked well for some of the children that have had similar surgeries. If so, any suggestions would be appreciated.

I also wanted to ask about the expansions every six months, how invasive are they and are they surgeries that he would need to stay in the hospital for??? As you can tell I'm a mess and am rambling. I'm just so stressed and WORRIED..... I wish the surgery was tomorrow, the anticipation and worrying prior to surgery is killing me.............

Thanks for reading and I wish the best for all,

Crystal

Carmell
07-30-2007, 04:26 PM
Hi Crystal,

First, take some deep breaths. Breathe slowly... You can do it. I promise.

Second, have you visited the VEPTR website/messageboard? You can find it here: http://www.veptr.com/megabbs I'm not sure which expandable rods your son will be having, but, this messageboard will be great to get answers to your very real questions. There are many families on that board with children who have very different medical backgrounds. The VEPTR devices (Vertical Expandable Prosthetic Titanium Rib) has helped give them a quality of life improvement. My son, Braydon, included.

About balance - He will have to re-learn his body's new balance, but my gut feeling is it will go better than you expect. His body won't have to be altering itself to compensate for the curved spine. It may take a few weeks, but my guess is you will see a dramatic improvement in his gait/balance/etc.

What hospital/surgeon will be doing the surgery?

Your fears from his open heart surgery experience are very real and understandable. This is a great example of how you need to be vocal with the anesthesiologists, the nursing staff, the pain management people, etc. (in addition to the surgeon - he/she only does the operating). Find out the pain management plan BEFORE the day of the surgery. Keep a notebook of what meds are given and at what time. This helps keep him from having breakthrough pain, which is very hard to get under control. My Braydon is a VEPTR patient (6 yrs in August). I'd be happy to share his pain management plan with you - feel free to email me at boulderfam@hotmail.com

Braydon's expansion surgeries have been done every 6-8 months. He's 12yrs old now, and we're able to go longer between expansions. I would dare bet your son would be able to go longer than 6 months because he's not having growth spurts at this point. There are cues and clues to watch for when he is ready for an expansion. Again, I'd be happy to share those details with you in an email (gets too wordy on boards like this).

Some children are able to have expansion surgeries as out-patient procedures. Braydon needs at least one night in-patient to get his pain under control and be recovered enough to go home. Each time they cut into the back, they are cutting through muscle tissue. For Braydon, muscle spasms are the most uncomfortable part of recovery. Some kids have no problems from this. Every child is different.

There are so many things to share - let me know what else you want to know. I understand how overwhelming this is for you. You'll do great, I'm sure. Keep me posted and feel free to email me anytime. I'll even be happy to give you my phone number, if you need someone to talk to in real life. My best to you.