More surgery for Spencer

[Spencer's Dad]

Hi all,

Been a while since I've been here, but I see the forum is as helpful as ever. What a great place to share our anxieties, fears, frustrations and good news with others that understand them. I wish a forum like this existed for Spencer's disease (PMD Luekodystrophy)...sigh.

Anyway, thought I would give you an update on Spencer for those who may be interested. Spencer's fusion was a little more than a year ago and so the docs now want to go in an remove the portion of his rod that pulled through the vertebrae and is protruding from his lower back. Hopefully this won't be a big deal since it is just hardware removal, and also hopefully it makes him more comfortable when lying on his back. Still, it is another surgery and I feel very bad for the little guy.

Otherwise, Spencer remains about the same. He continues to have GI issues and he went through a really bad bout with the flu this year (two trips to the ER) even though he had a flu shot. I will be very glad when the high temp of the day is above 60 degrees.

Thanks again to all of you who helped us so much a year ago, and keep up the good work.

Robert

[flowerpower]

Hi Robert,

Nice to hear from you, and thanks for the update on Spencer. Sorry to hear he has to go through surgery again, hopefully it won't be very long or invasive. Will keep him in prayers for successful surgery and quick recovery. Glad he is over the flu bug, it was really bad this year, wasn't it!? Any date on his surgery yet? Please keep us posted -

Take care,
Renee

[mariaf]

Hi Robert,

Ditto what Renee said about letting us know the surgery date. That's exactly what I was going to ask you to do.

I really hope this surgery will help him and ease his discomfort.

By the way, we've missed you!

Please keep us posted. I will keep Spencer in my prayers.

[Spencer's Dad]

Aahh, good to hear from you Renee and Maria. Hope things are well with you. The surgery is tomorrow (3-11), though I don't know the time yet. Nor do I know if it's outpatient or if we will stay overnight. Thanks for your thoughtfulness.

[MATJESNIC]

Robert,

I am really sorry he has to go through another surgery. Any idea why that happened. It's so difficult to let our guards down. I really feel for you. I'm sure everything will be fine and we all really care. So please keep us posted. Think Spring when all of our kids can stop getting sick so much.

[Spencer's Dad]

Melissa,

Yes we know what happened. It actually happened during Spencer's spinal fusion surgery. His vertebrae are very fragile and when Dr. D'Astous was placing the last stitch the vertebrae was so thin that the stitch pulled through the bone. There was not enough bone to try another stitch and the hole in the rod could not be lined up with another vertebrae so Dr. D'Astous left it the way it was. This is probably the reason he could not get Spencer's curve any better than about 22 degrees. We have known about it all along and figured it would need to come out at some point since it is just under the skin and would very likely cause an unhealing pressure sore if left in. So tomorrow we take care of it.

We finally got our surgery time (6:00am) and found out we stay in the hospital for at least two nights....long sigh. Well, I guess we are pretty used to that by now. In fact, sometimes I think I actually sleep better in the hospital than at home...LOL. How sad is that?

[Carmell]

Big hugs to you and Spencer. Hopefully surgery is well underway now, or even done? Many prayers that this will resolve the problem and Spencer will heal well. Did Dr. D say if the fusion has healed well? Good and solid? If so, the rod removal should heal well and he will go on his merry way.

In January, I checked out your website to see if there had been any updates on Spencer. He has been on my mind for a couple of months. I was wondering how things were going. Glad to hear he made it through the flu - but how frightening for all of you. The rest of this week doesn't look like good weather. Hopefully soon spring will be here. Take care and I'll watch for an update after surgery.

[Spencer's Dad]

Hey all,

Surgery went well! The rod came out easily and the docs said we could go home today. Yea!! (Apparently they think we know how to handle post op issues well enough on our own that we don't have to stay in the hospital). Spencer is doing well and has only complained a little from pain.

Thanks once again, everyone, for being there at a stressful time for us. Its just nice to know that someone who knows a little bit about how hard this can be is there to sooth my anxieties.

Carmell, so good to hear from you again. As always, if you ever get a chance to stop by on one of your many visits south, please don't hesitate.

Robert

[flowerpower]

Hi Robert,

Thanks for the update, glad to hear everything went well. Even better that you get to go home today! :) I'm sure Spencer will rest more easily at home in familiar surroundings...hopefully you will too, lol! hope all continues to go well with his recovery.

Take care,
Renee

[mariaf]

Wow, that was the kind of news I was waiting to hear!!!! I'm SOOO glad it went so smoothly.

Try not to be a stranger :)

Hugs to Spencer,