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Thread: A Concerned Dad

  1. #1
    Join Date
    Jan 2007
    Posts
    65

    A Concerned Dad

    Hi everyone,

    I am new here and am wondering if anyone in a similar situation would be willing to reassure us about this surgery and how things have/are working out for them.

    My son, Spencer is 10 years old and has PMD Luekodsytrophy (a progressive degenerative disease of the brain). He is nonambulatory, nonverbal, and cant even support his own weight. He is fed continuously by a GJ tube. He also has a severe curve (more than 110 degrees).

    We are scheduled for surgery next week and, honestly, even the "success" stories on this and other sites, scare me to death. It seems that recovery is so long and painful even for an otherwise healthy person, and I just dont know how little Spencer is going to fare.

    Since some of the previous threads seem to indicate there are others on this forum with children like Spencer who have had this surgery and I was hoping someone might share some advice on how to get through this and what things will be like for the next few weeks, months and years? Anything encouraging would be very welcome, but we most want to know what reality will be like.

    Thank you, and if you would be willing to answer specific questions, please let us know.

    A very concerned Spencer's Dad.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hello Spencer's Dad,

    We'll be thinking of you and Spencer and your family next week. You are correct - scoliosis surgery is NOT a piece of cake. However, if done by a very experienced surgeon, with exceptional medical care post-op, he should do great. You already know there are several ways of knowing if he's in pain (ie, elevated blood pressure, rapid breathing, fever, etc). If the nurses are good, they will be able to keep him as comfortable as possible. With a successful surgery, you will see a great outcome in the end.

    Do you mind telling us who will be doing the surgery and where?

    I wish you the very best. Please let us know when you can how things go.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Jan 2007
    Posts
    65

    Thanks, Carmell

    Carmell,

    Thank you for your encouraging words. I was hoping I might catch your interest. Based on my brief exposure to this forum, you are a real force in this area and ,honestly, we need someone experienced (besides the docs) to tell us we can make it through this. (A good coach to help with the pregame jitters.)

    Actually, I think we may be neighbors of sorts. Our ped ortho is Dr. Carrol and our surgeon is Dr. D'astous, both at Shriner's in SLC. Dr. Carrol worked with Dr. Smith at PCMC before moving to Shriners and we consulted with Dr. Smith before doing Spencer's hip surgery. This surgery will be performed by Dr. D'astous at PCMC and Spencer will likely be transfered from there back to Shriners when he is out of ICU and stable. We love Dr. Carrol and are doing the surgery based on her recommendation. We have only met Dr. D'astous once for the presurgery consult. We don't know much about him but Dr. Carrol speaks highly of him. Have you any experience or knowlege about him?

    Also, one of the big concerns we have is intubation. In all of Spencer's other surgeries he has not had to be intubated and so this is something new and scary for us. We are very afraid we wont be able to get him off the vent. Do you have any experience or know of someone with debilitating nuero-muscular atrophy who has had this procedure and their experience coming off the vent?

    Thanks again for your reply. It helps just to be able to express our concerns to someone else who knows...

    Taking Deep Breaths,

    Spencer's Dad.

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again,

    Even on the WWW, it truly is a small world. I know of Dr. D'Astous very well. He specializes in infantile scoliosis and non-surgical treatment for these very young babies. People travel from around the world to see him for this. Shriners in SLC and in Erie PA are the only hospitals in the USA doing a specific type of serial casting for these kids. Very good results for them.

    I also know Dr. Carroll. She was still at PCMC/UofU doing her fellowship when Braydon had his fusion surgery as an infant. She was involved in his surgery then, as well as his clubfoot repair a couple of months earlier. I haven't seen her since, but hear of her good work at Shriners.

    Dr. Smith is Braydon's orthopod. I know he works very closely with Dr. D'Astous on many very difficult cases. There is a family coming from Detriot MI in a couple of weeks who's 22month old son is having VEPTR surgery by Dr. Smith. He is a patient of Dr. D'Astous and will continue much of his recovery at Shriners after his implant surgery.

    I can understand your reservations about intubation. If I were in your shoes, I would contact a pulminologist and an anesthesiologist before surgery next week to make sure your worries are somewhat pacified. You won't be comfortable until he's fully extubated and doing well on his own. I know. I would talk to as many people as it takes to answer your questions. Spencer isn't a typical patient. Keep asking questions until you feel confident in the procedure that they've proposed. PCMC is very good to allow parental input (whether they discard the input once the parents are out of sight, I don't know). When Braydon has his surgeries (twice a year) we are able to tell them what works well for him, and what doesn't work well. They have been very good to allow us to at least speak our wishes.

    The other thing I think should be stressed is the PICU care. I think you should insist on Respiratory Therapy (RT) scheduled for as long as he needs it. In some instances, I've had parents tell me that the PICU staff didn't feel RT was necessary and that they had to fight for RT for their child. RT will help keep his lungs clear, especially since he won't be able to cough and clear his lungs like he needs to to keep pneumonia away. This is something to ask the pulminologist and/or anesthesiologist and even Dr. D'Astous. I'm sure he would be open to this suggestion. Ask him to schedule it (scheduling something means they HAVE to do it, not just as needed - does that make sense?).

    Done rambling here... feel free to contact me at boulderfam@hotmail.com I'd be happy to give you my home number if you need a cheerleader - you CAN do this, I promise. Like you said... take a deep breath... exhale... breathe... exhale... good job.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
    Join Date
    May 2009
    Posts
    84
    Spencer's dad have you tried Lorenzo's Oil? Or is PMD Luekodsytrophy different than ALD? I watched the movie Lorenzo's oil in Bio and did a project on it.
    Have you ever seen the movie Lorenzo's Oil?

  6. #6
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397

    Thumbs up

    Hello Spencer's Dad,
    You have to know that, although I am still somewhat of a newbie to this site, as well, I have already come to appreciate these folks on here. I have gained so much knowledge and it just helps to be able to bounce things off other people, you know? It seems for me anyway, when I get a doctor's office finally on the phone, and it's never on one try, I can't seem to remember on question I want to ask. That's why we have to make lists I guess. But, I've already bounced a few questions off the folks on here and it helps immensely.
    Please know that I, too, am pulling for little Spencer. He truly is an Angel, I can tell!!!! Good luck and please keep us posted!

  7. #7
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    I think Spencer's Dad has probably found some answers to his questions by now.......this post is over two years old!
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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