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babachi
11-30-2008, 02:55 PM
So my son Jesse is having his surgery Dec 15th. I don't have any info other than that. We got a booklet from his doctor that has some good info, length of stay, what happens the day of, etc. I don't know how much of the spine they are fusing, how many hours, etc. I do know that in February, his curve was 53 degrees.
Jesse has his pre-op Tuesday and next Wednesday he goes in for an MRI. (I am having a hard time thinking of all my questions right now) About how long is this surgery? Any suggestions what to ask at pre op? what will it be like when he gets home? Did you use the blood bank? Jesse is opposed to giving his own blood (he passes out), but his dad is not the same type, so it would be just me donating. The surgeon has called for 2 units. Can I donate more than one unit at a time?
I'm scared to death. I don't know how I'll manage to stay sane while he's in the OR, thinking I may need valium or ativan ;). I'm bringing my laptop, a book, magazines. What did some of you do?
I told my husband to prepare my mother in law for the fact that I may not be at her house( 10 min drive) Christmas Eve, that we have no idea how Jesse will be faring. He seems to think Jesse will be just fine for me to leave home with my dad, (if not take with us), that it'll be 9 days post op and I dont need to "coddle the kid!" I dont think he realizes how serious and/or involved the surgery and recovery are. Well, he does and he doesn't.
Anyway, that's what I have for now. Any suggestions are much appreciated!

Pooka1
11-30-2008, 03:32 PM
DOH! I meant to add a new post but instead edited my old post and can't get the original back.



I wrote: "The overarching answer to all your questions is to ask the surgeon. S/he is in the best position to answer specific questions about the surgery and recovery."

I see from the other answers that I need to qualify my answer... the surgeon probably will have no input on the "coddling" thing or what to do in the waiting room.:D

In reverse order, I think you'll likely end up doing what other folks here have written. I glanced at the TV, read parts of magazine articles, stared out the window, "coddled" my other daughter who chose to come with us to the hospital rather than go to school. I gave her the choice knowing that if she could concentrate, she would have gone to school. I don't think this is something you need to plan for. Playing this waiting game by ear is okay in my opinion.

In re potential coddling in the immediate post-op period, I would just hold my cards and let your husband observe your son for himself. I predict there will be no comments about coddling.

I am at a loss to field these "my husband says this..." comment. Certainly my husband had equal input in how we handle our daughters' scoliosis. But he is not prone to make claims absent evidence or without having done more research on the point than I had done. He did his research and I did mine and we discussed it. This is no time for opining out of the blue or making wishful plans that have a good chance of needing to be revised.

Sorry if I mischaracterized what your are dealing with. Again, I am at a loss on that topic. I'm really just guessing.

(Man, this has a got to be some record for ending sentences with prepositions! I'm too rushed today to recompose. Apologies.)

WNCmom
11-30-2008, 04:13 PM
Welcome!

My 13 yo son was fused 2+ weeks ago on Nov 13. I'll try to answer your questions based on my experience, which may be different from yours.

*Surgery took 9 hours. It was a long fusion. Shorter fusions can take much less time, but no matter what, plan on a long day the day of surgery.

*My son did give blood; so did his father and I (we're all the same blood type). He used all 3 units, and didn't need any banked blood, which is considered to be safe, so we were okay if he needed it. I believe you can only donate one unit at a time, and depending on where you give and where the surgery is, there is a certain time period required to process directed donations. If you do donate, be well hydrated and eat a good meal beforehand and rest and eat afterward.

*On day 9 post-op (where you'll be on Christmas Eve), my son had only been out of the hospital 3 days, and he wasn't up to going anywhere. I agree with Sharon that you need to wait and see on this, but I'll bet your son won't be ready for visiting away from home.

*The surgery is huge, and although he will be required to walk every day soon afterward, there are ways in which he will need to be coddled for a while. My son can now get in and out of bed and a recliner on his own, but he sometimes still likes help doing these things, and because of bending restrictions, he is unable to put on trousers or shoes and socks by himself. Sitting in a straight chair is getting easier, but it is still the hardest thing for him to do. He often goes back to bed to rest for a while during the day. My advice would be to save the "non-coddling" for the activities that are a required part of recovery (walking and breathing exercises--you'll learn more about this in the hospital).

During the surgery, I couldn't read a book, although my husband could. I spent a lot of time pacing, writing in my journal, and reading short, shallow magazine articles, which was all my attention span could handle that day. Some people watch TV--there's often one in the waiting room. A few weeks before surgery we set up an internet care page and it was therapeutic to update that on a daily basis. It also saved us lots of phone calls and allowed us to feel supported by friends without being interrupted by a ringing phone.

We got a recliner before surgery, and it has proven to be a lifesaver now that he is home. Others may have suggestions on other things that are nice to have, but for us this has been the only critical thing.

Good luck! You will do fine. Feel free to ask more questions as they come up. This forum is a fantastic resource.

Mary Ellen

Carmell
12-01-2008, 12:48 PM
Ditto what everyone else said. This is a HUGE surgery. If your hubby thinks you want to "coddle" him, maybe make this analogy - This surgery (scoliosis fusion surgery) is comparable to being hit by a MACK truck. Recovery takes a LOT out of you. Lots of rest, brief walking, and STAYING ON SCHEDULE with pain meds are all very important parts of the recovery. Reading the various experiences here is a good thing. However, you MUST remember that each patient is different and the surgery, recovery process, etc. can be very different. There are quite extreme cases here - Sharon's daughter had a breeze recovery (basically, still recovery from this HUGE surgery) while Lisa (Kitty)'s daughter is trying to take one day at a time to get to a baseline where she can start marking progress. Each person's medical history plays into this, the surgeon, any complications, etc. play into this. I hope your hubby is just unaware (ie, ignorant) of the magnitude of scoliosis surgery.

I think Jesse needs to be involved in all the decision making process here. He needs to be aware of the options and possible situations that may come up. Let him have some control over these decisions. Maybe your immediate family can celebrate Christmas Eve before his surgery, then the rest of the family can have their own celebration and Jesse won't feel like he's missed out totally (if he even cares at that point). Or wait until January when he feels better and have Christmas over again. Lots of options.

I, too, can't concentrate during surgery. Mindless TV is about the only thing going on around me. Can't concentrate to read. Can't concentrate to do puzzles/games. Don't have a creative bone in my body to do handwork, art, etc. Hubby is a pacer. Drives me crazy, but we manage to do fine. Not easy, at all. Yes, Valium/Ativan are good things for parents :)

Good luck and keep us posted. You are 2 weeks away. Lots of deep breaths. You're doing great.

skybonus
12-01-2008, 01:38 PM
Hi Bethany,

My 13 year old son had the surgery in June 2008 at Boston Children Hospital. I had a list of questions to ask his doctor at the pre op. I already send you a PM. I hope that might give you some idea to start. Let me know how your appt goes. I'll be thinking of you.

Patty