Trying to hold it together

[Carmell]

Marian,

I agree with Sharon - share as much with Paula (thanks for letting us know) that she will need to know. No need sharing things with her that goes on in the OR, since she won't be awake for that. Maybe even ask her how much she wants to know. If she doesn't want to know, don't force it on her. She'll get thru this whether you tell her everything or not. For little kids, role playing is great. When you let them be the doctor and go through the pre-op testing (look in eyes, ears, throat, take blood pressure (hug your arm), etc.) they have a better sense of what to expect. I also agree with Sharon that kids' imaginations can be a detriment. If they hear parts of the details, their imaginations kick in and in their minds the rest of the story can be more frightening than reality. Good luck finding a balance.

[alwayzsomethin']

Marian, ditto to all the advice. It's easy to beat yourself up about things, I believe that is a normal female reaction. I've done it myself. You have to focus on the positive and know you are taking care of business now. Try not to think about the coulda', shoulda', woulda'. You know you're in a good place here with plenty of support and great advice. Everyone is very helpful at passing on info by way of links, websites, or books, etc. Gather you info now, and do your research. Thats what my Kaitlyn called "momshomework".Tell Paula what she wants to know. In my experience, Kaitlyn did much better knowing what to expect. I didn't go overboard in details, though. When she would ask something , I would tell. If she didn't want to know, she would say, that was enough, I don't want to talk about it anymore, and that was fine. I never pushed the issue. You might not think it, but you guys are very strong, and will prevail. Hugs to you both, and hang in there! Your support for me while Kaitlyn was in surgery was comforting- so this comes right back at cha'. We're 2 days post-op and doing well. These kids are strong!!!!! Tracy

[alwayzsomethin']

Marian,

PS I got a chuckle out of your username. I did think you were a mom with pms Thanks for clarifying! Tracy

[pmsmom]

Marian,

I told Katelyn about everything she would remember. If it was something that she would be awake for I told her. Kids imaginations can be much worse than the real thing. Also, like Becky, we checked out some you tube videos - we even made our own but I don't know if we will post it or not because of privacy. Katelyn wants to since these others helped her but I don't know. Aynway, we watched Torries scoliosis video on you-tube (we just typed that in the search bar) I am not sure how to add attach. here. Anyway, she even e-mailed Torrie and Torrie e-mailed her. Torrie is 15 and had her surgery about 8 months ago. She does the video and e-mail thing to help other kids. She is really sweet and worth checking out. I don't think Katelyn understood completely that donor bone meant not her own bone and it came up in a conversation the other day and she had a complete meltdown. I think they should know whats going on. I don't regret telling her upfront even though she is an anxious child in general, she handled it okay. She likes to know whats going on. In our case, it helped her fears.

Sharon

Thanks, Sharon. All of these are great resources!

I'm trying to give info to Paula in small doses. She says she just wants this done and over with, but I don't want her to be shocked when she wakes up w/tubes and such.

I've asked her if she wants to email/talk to anyone who's been through this.
Right now, she says,"No."

So I will have to play it by ear.

Marian

[pmsmom]

Thanks, Carmell. I did figure that I'd be discretionary about the actual surgery as she'd be sedated.

I guess I just didn't want her to be shocked at the tubes, bloating, etc.

She's also *very* private and modest. That's good, but in the hospital while they're waiting for her to go to the bathroom, she could be in there a good half hour if she thinks someone is waiting to see if she goes--she's just that kind of kid. Often when we're out somewhere, she won't use a public bathroom unless no one is in there.

And when she was little, waiting for her to have a BM, well, you might as well pull up a chair, get comfy, and read "War and Peace."

[Snoopy]

Marian,

Paula probably won't remember much about the first few days in the hospital. The swelling will probably be gone within a day or so at the most, so that's something to prepare yourself for, but necessarily Paula.

Don't worry about the modesty issues. While in the hospital, I doubt she'll really care! From the very beginning, I did as much for Jamie as possible. I had the nurses show me how to log roll her and then had them watch me roll her to be sure I was doing it right. After that, I was the one who rolled Jamie whenever necessary. I also was the one who took her to the bathroom, gave her a bird bath as needed, walked with her in the halls, etc. I felt more comfortable doing it and Jamie trusted me more than the nurses to do it, so it worked well for us.

Has anyone told you to take sanitary pads to the hospital with you? A lot of girls and even the adult women, start their periods right after surgery. Paula might not start hers, but better to be prepared than to have to use the maternity pads they'll give her in the hospital!

Just in case Paula's modesty issues don't go away in the hospital, pack your copy of War and Peace!

Mary Lou

[alwayzsomethin']

Marian, like Mary Lou said, they did tell us more than likely you will start your period. My daughter finished hers the week before surgery, and she (thankfully) never did start. I really didn't want her to deal with that on top of everything else. However, I was the one who started a week early! True also about not caring about privacy and not remembering much!

ps: oops, I realized this am that i wrote in the thread last night we're 2 days post op. I lied, I meant 2 days home, 9 days post -op. Sorry! Tracy

[Beckymk]

The starting the period is one thing I'm concerned about for my daughter.

I know she isn't even thinking of it but she never does. She is the one that always thinks I'm insane for forcing her to take pads to camp with her every year "just in case", etc...

She has never even had her first one yet & so I'm just imagining the scenerio of your very first period on top of spinal fusion surgery. I feel so horrible for her but there is nothing we can do about it. It seems the odds are in the cards that it will be more likely than not to happen.

I will make sure I'm prepared as I have no clue what supplies a place like Shriner's would have for such things. I'm going to assume some sort but ? since it's not like a normal hospital that you can go grab something from another department, KWIM?

[smileyskl]

Marian and Becky,

We were told about the period thing also. Katelyn had just finished hers but we came prepared anyway. Also, I think because of all the pain killers and other things she was on, Katelyn was not concerned about Modesty (though she is normally modest) She remembers the tubes and all but again, I think because of the drugs, they didn't bother her. (Normally, it would freak her out) The swelling was a big shock to me but she never saw that - it was gone by the time she asked for a mirror (about 2 days). She didn't even care about the suppository for her potty troubles but she wanted the nurse to do it. (I guess in that situation she preferred a medical professional) but I helped with everything else. Everything will work out. Try not to worry too much. And I know thats easier said than done. We all do it

Sharon

[Carmell]

If Paula allowed you to read "War and Peace" as a child having a BM, PLEASE make sure they have a PLAN for her bowels after surgery. Constipation can make her recover MISERABLE. Lots of fluids BEFORE surgery will help. Please don't let them ignore this. She should have AT LEAST stool softeners as soon as she can tolerate liquids. Keep on top of this and she'll have a much more comfortable recovery.

[pmsmom]

Hi, Mary Lou.

I agree that there's a lot of things that Paula won't initially remember. I recall when my sister had a closed head injury sustained in a car accident back in 1987, there was a lot she didn't recall.

I had heard about the swelling. In fact, there's a lady that dh works with whose dd had the surgery last summer. She's filling him in on things like the swelling and such. At least, he's listening to her.

Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

So, I'm trying to rest as much as I can now b/c I think all I'll get is bathroom breaks. That is weighing on me.

Even though I have family in the area, my mom is 82 and can't really help. My sister is 43, but she has her own issues w/her head injury. Her older sister is 24 but really is not in touch w/us anymore. She acts interested, but she'd rather not be bothered if truth be told. It's too overwhelming for her so she tries to put it out of her mind.

So, keep your fingers crossed that I can find some respite.

I have seen the suggestions that you and others have made. I am adding things to my notebook as I go along. Hopefully, I'll remember to take it with me.

I think I will leave War and Peace home this time. I promised Paula that I would read the Lord of the Rings, so I'll be bringing some of those books along.

Take care,
Marian

[pmsmom]

How's your dd doing, Tracy?

We'll be bringing the pads. I hope I don't start--I thought I was in menopause, then went through a particularly stressful time recently and had a period.

Wouldn't that be a hoot if dd didn't get one and I did!

Marian

[pmsmom]

The starting the period is one thing I'm concerned about for my daughter.

I know she isn't even thinking of it but she never does. She is the one that always thinks I'm insane for forcing her to take pads to camp with her every year "just in case", etc...

That sounds like me! Only this time I told her that she needs to tell me what size underwear she has so she has new ones to take to the hospital. Isn't that like a mom!

[pmsmom]

Thanks, Sharon and Carmell!

I will make sure they have a plan for her bowels. Do they allow stuff from home?

I wasn't kidding about that thread I wrote somewhere about fruit-eze. It's this food supplement that does work and helps move the bowels.

Well, at least I'll have a supply at home! She's always had issues w/constipation, but her pediatrician recommended this *years* ago and she's been on it ever since.

[WNCmom]

Marian--

I've been out of town for the last week and just read your news. I'm sorry fusion is necessary, and I'm glad your daughter reached skeletal maturity before it became so. I want to chime in that in my experience the moms and their children who go through fusion are so much stronger than they think. My 13 yo son was fused T2 to L4 3+ months ago and is recovering very well. And the wait for surgery is so long and anxious that once it happens, time seems to fly.

Also, Becky--my son had his surgery at Shriners in Philadelpia and the hospital, as far as I could tell (I have nothing to compare it to--first really big surgery in our family), was very well equipped to meet every need that came up (and they serve many many children with many many needs). I particularly appreciated the PICU, which was quiet and well staffed.

You all will do very well--you're here, you're doing your research, and you'll be as prepared as you can be. Remember, swelling (facial, ankle, and genital) is common with this surgery, so don't let it scare you.

Mary Ellen