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Jazzy'smom
07-12-2009, 01:09 AM
The surgery is over and my daughter ( Jazzy) was in the hospital for 5 days. She's home now and in so much pain. I don't know what I would've done without this message board. I knew what to expect every step of the way. Not that it made it any easier. I told her Dr that I googled him and that I've been reading this message board to see what others have gone through so when she was really sick the first couple of days the nurse said I guess you knew this was going to happen because Dr G said you did a lot of research. That made me feel good.
I can't thank you all enough for telling your stories. It has helped me so much. I will be checking old messages to see what I can do to make Jazzy more comfortable.
She was in the Hospital on her B-day so they gave her a piece of cake with a candle on it and the nurses all chipped in and bought her a gift. That made her so happy.
I guess no matter how much you read you never realize how bad it really is. I knew she'd be in pain but I didn't realize it would be as bad as it is. She really doesn't complain but sometimes I see tears in her eyes and I know she was crying. Okay Thanks for listening.

Pouncy
07-12-2009, 06:17 PM
I had the surgery 4 days before my birthday so I spent it in the hospital too! If her recovery is anything like mine was she will be fine :)

Pooka1
07-12-2009, 06:23 PM
It's hard to know exactly what you mean by your comments but when my daughter came home after 5 days, she was on pain meds. That isn't to say she was never in pain. But I never let her miss her meds and she seemed okay enough, never as bad as episodes in the hospital when they were turning her and such.

I would not have described her as being in as much pain as you describe your daughter. And my general impression is that most other kids had less pain or a higher tolerance and were on meds less time than my daughter.

Are you talking about pain in her back or along the incision?

Jazzy'smom
07-12-2009, 09:33 PM
When I say she's in pain I mean her back hurts so bad that sometimes she can hardly stand up. She's on percocet and valium and I make sure she get's it on time but she still has a lot of pain. She has her good moments but they don't last long. I guess it just takes time. Thanks for listening

Pooka1
07-12-2009, 09:41 PM
I think the important thing is that she should not be getting worse in the pain department.

I also wonder if she is getting enough pain meds. There is no reason to suffer.

laurieg6
07-12-2009, 09:50 PM
If I were you, I would definitely call the doctor's office and get them to give her better pain meds. Maybe she needs a higher dose or a different kind or a different combination. My son never had pain like you're describing after he left the hospital. Especially since you said you're keeping on the med schedule, I think her suffering is, to some extent, not adequately being dealt with by the meds that you were given for her.

I'm so sorry and I hope you get her some better relief soon.

Pouncy
07-13-2009, 12:28 AM
For the first 2 weeks or so after leaving the hospital I remember being in pain but it was never excruciating. It was more pain than before I had surgery but the pain felt like it was coming from where the scars were and not from my actual back like it was before surgery. Hope she feels better soon. The first 2-3 weeks after leaving the hospital was the worst for me but it will get better. :)

Snoopy
07-13-2009, 06:58 AM
When I say she's in pain I mean her back hurts so bad that sometimes she can hardly stand up. She's on percocet and valium and I make sure she get's it on time but she still has a lot of pain. She has her good moments but they don't last long. I guess it just takes time. Thanks for listening

Was your daughter's pain well controlled before leaving the hospital? When my daughter was in the hospital, I had them change her pain meds because the one she was on wasn't controlling her pain and I refused to take her home before I knew her pain was well controlled. I don't remember what worked best for her---percocet or vicadin. You might need to switch her pain medication.

Whenever possible, get your daughter walking. Walking is very good for them during their recovery. It helps keep them from getting stiff. Even at 4 1/2 years post-op, my daughter complains of being stiff if she lays around all day.

Good luck. Remember to take care of yourself as well as your daughter.

Mary Lou

Snoopy
07-13-2009, 07:03 AM
I would not have described her as being in as much pain as you describe your daughter. And my general impression is that most other kids had less pain or a higher tolerance and were on meds less time than my daughter.

Jamie didn't have very much pain after surgery. In fact, she was off all pain meds by the time she was two weeks post-op. Then again, she is one of the kids you mentioned--she has a high tolerance for pain. Every child recovers differently and has a different level of pain tolerance.


Mary Lou

Pooka1
07-13-2009, 07:35 AM
I think the point here is that the meds at home should be such that the pain is never worse than it was in the hospital and that it should be improving noticeably at least every few days if not every day.

I strongly agree with the folks who suggest consulting on the pain meds and also walking as much as possible. Walking made a big difference for my kid. It was a key component in her recovery if not the key component. She realized this so I never had to remind her to walk.

Jazzy'smom
07-13-2009, 11:52 AM
Thanks for your comments. I will be calling the DR today because she is still in a lot of pain. It's been a week now. She handles pain pretty good so when she says she's in pain I know she's really hurting. She said she can't wait to be off all the meds because they make her tired and she doesn't like taking them. She had a lot of pain in the hospital to. I think the valium works better then the percocet but she can only have them every 6 hours.
I agree about taking care of myself, I feel like I have a new born baby to take care of. I've only been getting about 4 hours of sleep a night because I don't want her to miss her meds.
Listening to all your comments I feel somethings not right that she still has so much pain. She tries to walk but the pain is so bad she can hardly stand up straight. Okay I'm calling the Dr now and will let you know what they say.

mgs
07-13-2009, 01:49 PM
You are giving her both the percocet AND the valium throughout the day. . .not either/ or. . .right?

Hugs to Jazzy, and to Jazzy's mom.

Sherie
07-13-2009, 03:42 PM
My daughter was still in quite a lot of pain after we came home from the hospital. I would not say she was in more pain than when she was in the hospital, but it was still significant. She also didn't complain or lie around moaning and groaning, but it's pretty obvious when they're suffering. And
not all kids are the same so don't assume something is wrong just because your daughter doesn't follow the same recovery process as others.

How long is your dd's fusion? The kids that I knew who had longer fusions, like my dd's, had longer recovery times.

Sheena was off prescription meds by 3 weeks but only because she didn't like the way they made her feel. She could have probably stayed on them another week and been in better shape to switch to OTC meds.

It's still very early and every day is a tiny bit better. Sheena was sleeping through the night about one week after we were home. Between 4-5 weeks she was feeling much better.

Take care, hope Jazzy's feeling better soon.

Jazzy'smom
07-14-2009, 02:19 AM
Again thanks for all your replys. Yes she get's percocet and Valiums. I did talk to the doctor and he said she could have 2 percocets if she needs it. She was fused from T-4 to L-1. I know everyone is different and I can't go by other peoples progress. She did seem a little better today. Maybe I'm expecting to much to soon. I can't tell you how much this message board means to me. It's nice to talk to other who are going through the same thing. Here I am still up at 2:15 in the morning because she get a valium at 3:15. I did fall asleep for an hour or so but woke up because I didn't want to miss her pills. I didn't want to set an alarm because I ddin't want to wake up DH since he has to get up early enough for work. Okay I'll let you know how tomorrow goes or today LOL!

JenniferG
07-14-2009, 04:45 AM
The Mums on this forum deserve a medal.

I hope things are starting to ease up for Jazzy now and for you too. It won't be long before this hard part is behind you and you can just enjoy watching Jazzy improve in leaps and bounds.

Snoopy
07-14-2009, 07:29 AM
Again thanks for all your replys. Yes she get's percocet and Valiums. I did talk to the doctor and he said she could have 2 percocets if she needs it. She was fused from T-4 to L-1. I know everyone is different and I can't go by other peoples progress. She did seem a little better today. Maybe I'm expecting to much to soon. I can't tell you how much this message board means to me. It's nice to talk to other who are going through the same thing. Here I am still up at 2:15 in the morning because she get a valium at 3:15. I did fall asleep for an hour or so but woke up because I didn't want to miss her pills. I didn't want to set an alarm because I ddin't want to wake up DH since he has to get up early enough for work. Okay I'll let you know how tomorrow goes or today LOL!

T4-L1 is a long fusion. Our daughters' fusions are very similar--Jamie is fused from T3-L2. I'm glad you are remembering that everyone's recovery is different. Although our daughters' fusions are pretty much the same, their recovery has been very differnt already! I'm glad you are using this forum as a guide and not an exact plan of how your daughter's recovery should be going.

Continue trusting your instincts--if something doesn't seem right, call the doctor. You know your child best and you'll know when it is time to start spacing the pain meds out further and eventuallly when to stop them all together. Is your daughter eating at all? Try to make sure she eats with her pain meds so she doesn't get sick to the stomach. She needs to eat healthy foods and drink TONS of water to avoid getting constipated. Constipation seems to be a big problem with a lot of the narcotic type pain meds.

Hang in there. You are doing a great job!

Mary Lou

mgs
07-14-2009, 08:00 AM
I thought of you both when I woke up in the night, and wondered how your night was going.

You must be absolutely worn out, emotionally and physically.

I hope today is a "feeling better" day, and that you both get some much needed rest.

Lorraine 1966
07-15-2009, 04:40 AM
Hi, Jazzys mum I wonder how you are both doing now. You are doing a wonderful job making sure your daughter gets her meds on time. You must take care of yourself as well though.

Snoopy said watch for constipation and that is just so important as well. If she is constipated that would not help the pain at all either, bless her. All the advice they give on the forum is just wonderful and so glad you are using it as a guideline as you are right, we are all different.

Gosh mums ( and their patients) are very courageous and it does help you all to have a forum such as this to fall back on when needed

Lorraine..

Jazzy'smom
07-15-2009, 08:14 PM
I wrote yesterday but it didn't post. Anyway today was a good day. Jazzy's friend is visiting from Colorado and stopped by for a couple of hours. They were doing there hair playing on the computer, looking through there year books and just doing what girls do. It was nice seeing the old jazzy. She left at 4 O'clock and Jazzy ate some chicken, pudding and Graham crackers. It's now 8 PM and she's been asleep since 5 pm. I know the visit took a lot out of her but I think it did her good. This has been the best day for me since the surgery. I love seeing my baby having fun and forgetting the pain. Life is good. I'm doing a happy dance right now. :-)
I actually got some sleep last night from 1:30 to 9:30. Since hubby got up for work at 4:30 he was able to give her her meds. It felt great!!!
Thanks for listening. Let's hope tomorrow is another good day. Fingers crossed.

JenniferG
07-15-2009, 08:23 PM
I wrote a few posts yesterday but they didn't show up as well.

I just said that the Mums on this forum deserve a medal for what they do. I know, you want to, and it comes naturally, but it's hugely stressful and tiring. I said once before, if there's one thing worse than facing this surgery yourself, it's being the Mum of a child facing it.

Here's to all the Mums! <clink>

mgs
07-16-2009, 07:26 PM
It's good to read happy news! Hope the worst is behind her (and you!) and that you can get some enjoyment out of what's left of the summer!

Jazzy'smom
07-16-2009, 08:28 PM
What a difference a day makes. Jazzy got a shower by herself today. I helped her in and out and dried her off but she washed herself. Friends came over to visit and after they left she went to sleep. Her pain wasn't as bad as it has been. She hasn't had her pills since 2:30 and it now 8:30 of course she's sleeping so I'll wait til she wakes up to see how she's doing. It was hard to believe she'd get better anytime soon but she did. Next step is to get off of the meds because they make her dizzy. Let's hope tomorrow will be even better then today.

JenniferG
07-17-2009, 12:45 AM
Good news! I can feel your optimism all the way to Queensland.;) The worst is over.

Lorraine 1966
07-17-2009, 04:15 AM
Oh Wow, how good is that, so glad for Jazzy and you, her mum. The road to recovery may at last be starting, all the best.

Lorraine.

Snoopy
07-17-2009, 06:52 AM
That's awesome! Tell her I said keep up the great work! You are both doing a great job.

Mary Lou

Beckymk
07-17-2009, 01:07 PM
I'm glad she is doing so well!!!

I had to laugh about the birthday! My DD had her surgery the day before her birthday.

It seems there are several of us that had the kids in the hospital over their birthdays. Just struck me as unusual.

I know we did have to change pain meds in the hospital too, not so much for the pain level but because the first ones made her nauseous/dizzy but that was due to not eating a lot.

Basically she ended up on Tylenol 3 and that worked -- not so well the first couple times but then it ended up being fine. I remember when she couldn't have the meds for 6 hours and she would be wanting them at 4. It was definitely a balancing act to find the right combination. She did sleep a LOT in the beginning too -- it didn't take much to wear her out.

I will tell you as of right now 4 months out you would never know she had the surgery. It takes a while -- mine was most definitely NOT one to be ready to go back to school too much before her 6 weeks was up but once she got to that point, she was most definitely ready. It is amazing to see how far they come in what really is a relatively short time considering the type of surgery.