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purplepixie
09-22-2009, 06:36 AM
Tomorrow morning at this time I will be preparing my daughter for the trip to the hospital. Some moments I feel like we are all prepared, aside form needing to pack our bag. Other moments I found myself terrified and wondering what I am forgetting or stressing about what could go wrong.

Find it so hard dealing with her having to have this. Her strong desire to feel normal. She is 12 now and knows that she does not look like other kids. She constantly asks if this will make her look more normal, whether her clothes will finally fit like they are supposed to. I am so hopeful that this will give her some of her confidence back.

I also worry or beat myself up because I am taking a child that feels no pain right now and willingly subjecting her to pain. In the end I know it should be worth it, but it still feels wrong. Have others dealt with this?

If there is any last minute suggestions for things to pack, do, prepare for..etc. Please, feel free to let me know. I follow all your stories as much as I can and am always so happy to see the progress you have made. Getting valuable info from those who have walked before us is appreciated.

Thanks....
Jules

debbei
09-22-2009, 07:00 AM
Tomorrow morning at this time I will be preparing my daughter for the trip to the hospital. Some moments I feel like we are all prepared, aside form needing to pack our bag. Other moments I found myself terrified and wondering what I am forgetting or stressing about what could go wrong.

Find it so hard dealing with her having to have this. Her strong desire to feel normal. She is 12 now and knows that she does not look like other kids. She constantly asks if this will make her look more normal, whether her clothes will finally fit like they are supposed to. I am so hopeful that this will give her some of her confidence back.

I also worry or beat myself up because I am taking a child that feels no pain right now and willingly subjecting her to pain. In the end I know it should be worth it, but it still feels wrong. Have others dealt with this?

If there is any last minute suggestions for things to pack, do, prepare for..etc. Please, feel free to let me know. I follow all your stories as much as I can and am always so happy to see the progress you have made. Getting valuable info from those who have walked before us is appreciated.

Thanks....
Jules

Jules,

I know firsthand that the anticipation is horrible. For myself I was counting the days & hours down with dread. I don't have any experience with one of my kids having this surgery, but a friend of mine's 13 year old daughter had surgery the end of the summer and was fused 6 or 7 levels. She is doing fantastic, and started school on time. Many of her friends aren't even aware of what she went through. This girl was off all narcotics in just a few weeks.

The young ones usually snap back really quickly. Good luck to you both, and you'll be in my thoughts.

valleygirl
09-22-2009, 11:40 AM
Your daughter and yourself will do just fine. You are most likely way more prepared than you need to be and if you are like me, you probably won't even touch anything that you take with you. Stay strong and stay positive - you are almost there.

I'll keep you in my prayers and await your post-op posts (when you are ready).

Hugs,

Pooka1
09-22-2009, 12:04 PM
Jules,

You can handle this. Your daughter can handle this.

Your surgeon can fix her. With the new instrumentation, he will be able to de-rotate her to a great extent if that is what is causing your daughter concern in how she looks.

My daughter had a similar curve (58*) to your daughter's (which I'm assume is very rotated based on your comments). She look and feels completely normal and was glad to have the surgery.

In re pain, my daughter only had pain after the decision to have surgery, shortly before the operation. So we pulled the trigger with no pain as you are doing. Surgery was not really a choice for us as the curve had been moving for 5* a month for at least 5 months. So it was easier on everyone because of the no-choice aspect... no real weighing the options necessary when you have only one hope... fusion.

Kids bounce back relatively quickly. It's going to be a hard several days but then she will improve rapidly I predict.

My other kid will be fused on 6 October. After helping the first kid through and seeing the recovery and result, I am not so much worried at this point as hoping to just get this stuff behind my kids so they can get on with their life already. I am very much looking forward to the surgery in that sense.

Good luck.

lumbar3491
09-22-2009, 01:21 PM
Hi Jules

I'll keep you and your daughter in my thoughts and prayers. I don't have any children but can only imagine how difficult this must be for you.

For my recent scoliosis surgery, I ended up sending everything I had packed, including all valuables, home with my partner. The hospital provided everything I needed - hospital gown, which they changed daily, tooth brush, tooth paste, brush, etc. I'm assuming that this will be the same for your daughter.

I'm sure you will both get through the surgery just fine.

Cheers!

Karen

WNCmom
09-22-2009, 01:38 PM
Jules:

Tomorrow will be a long day, but once you are on the other side of surgery, time will go quickly.

Be prepared for lots of swelling post-op (not all kids swell, but many do, and mine did), and don't let it scare you. It will subside quickly. You'll be surprised at how quickly your daughter will gain every day.

My son (who also had no pain until right before surgery) had a long fusion on a big curve at age 13 nearly a year ago. He is one of those kids who was off all pain meds in about 2 weeks (not common, but it does happen), and like most, he was back in school at one month. It's hard to believe it has been 10+ months.

I think your concerns are quite normal, but I also think you know you are doing what's best for your child. Soon you'll be concerned only with attending to her needs as she recovers. Don't forget to take care of yourself!

We'll be thinking of you and rooting for you both tomorrow. Keep us posted.

Mary Ellen

gabs mum
09-22-2009, 05:00 PM
I am praying for you both and very excited for you to nearly be on the other side of surgery.


Donna.

JenniferG
09-22-2009, 05:34 PM
Good luck Jules and Khya. I've said it before, that there seems to be one thing worse than facing this surgery yourself, and that's if you have a child facing it. I really feel for the Mums and Dads.

Khya's going to look great in her new clothes, in a very short period of time!;):D

wigglesgiggles
09-22-2009, 07:04 PM
Jules,

Tomorrow will be the longest and hardest day in your life. My son was in surgery for 7 1/2 hours. I thought he would never get out of there. Please remember to take care of yourself while your daughter is surgery. Please make sure to eat and drink during that time, you will need all the strength you can muster up afterwards. Just know that you are doing the best thing for your daughter. I will keep you in my prayers.

Christine

LynnMarie74
09-22-2009, 10:09 PM
Best Wishes.....good luck to you both.


Lynn

titaniumed
09-23-2009, 02:48 AM
Good luck Jules and Khya. I've said it before, that there seems to be one thing worse than facing this surgery yourself, and that's if you have a child facing it. I really feel for the Mums and Dads.

I stole your post Jen, as I feel the same exact way.

Ed

purplepixie
09-23-2009, 04:51 AM
I want to thank you each of you for your kind words and prayers. I would have responded sooner but I didn't know there were responses. I have hope and faith that she will do fine, and I appreciate you all thinking of us.

Counting the hours now till I wake her to go. Thankfully I have friends meeting me there to help keep me distracted.

You are all right, our kids are strong, I think far more resilient than I give them credit for. And yes, there is nothing worse I know of than seeing our children go through this. Though for those who went through it themselves on here it must have also been the same. You are all amazing. To take the time to encourage and support others. We are truly blessed to have such wonderful people to share this journey with.

And to Pooka1, I know you have traveled this road before. Still my thoughts are with you and your daughter. I hope your surgery on the 6th is a breeze and you get back to the normal, happy days of their growing.

I have internet at the hospital so I shall try and post updates as I have them. As well if I have questions that are not answered I know where to turn.

Thank you all so much.
Jules and Khya

dolores a
09-23-2009, 06:22 AM
Hi Jules,you are probably at the hospital at this point, just wanted to also let you know your daughter is on my prayer list for a speedy healing and back to her normal routine very soon!

purplepixie
09-24-2009, 10:03 AM
She made it through surgery with flying colours! Was certainly the longest day of my life, but finally got to see her and it was wonderful. Has been a bit of a bumpy road, though not nearly as bad as I thought it would be. Biggest thing seems to be pain management and keeping her breathing under control.

With any luck we will get sprung from PICU today and get a bed on the regular ward. Thankfully the PICU is flexible with who they allow for visitors, so family and friends have been able to come see her.

Hoping today continues to improve. Shall write back as I have time. Thank you all for the kind words and prayers. They worked, and I am grateful.

Jules

jrnyc
09-24-2009, 11:28 AM
it is all healing from now on...khya will do well, & the more healing she does the happier you will be with your decision...your daughter is in my thoughts & prayers, & in those of many others...take care of yourself so you can take care of khya..may she be blessed with a happy, healthy & pain free life!

jess

WNCmom
09-24-2009, 12:52 PM
Jules--

Wonderful news! I have been thinking of you and Khya, so I am so glad to hear all went well. Remember to take care of yourself, too! You'll see her gain every day.

Mary Ellen

JenniferG
09-24-2009, 05:44 PM
Ah Jules, I can feel your relief and joy all the way to Australia.:D

Take care of yourself now, and let us know about Khya's progress.

valleygirl
09-24-2009, 06:08 PM
Yay, Jules...it's over! What a relief for you, I'm sure.
So glad to hear it all went so well. Now comes the hard work, which I'm sure both you and your daughter will come through with flying colors too! Keep up the good work, stay strong and take good care of both of you!

Gentle hugs,

purplepixie
09-25-2009, 08:51 PM
So, on day two finally. Was a long night because her IV machine kept setting off an alarm every couple minutes. Seems to be fixed now so hoping tonight means sleep for all!

She surprised everyone by not only sitting and standing, but also walking today. Was wonderful to see. And she was so happy to lose the catheter and use a real bathroom!

My questions now are is the uncontrollable itching normal? They say it is from the drugs and keep giving her Benadryl but it doesn't seem to help her. Thinking something different to try? Have been putting lotion on but it doesn't seem to help either.

Her other issue is that while yesterday eating jello, drinking juice, and having salad was fine - today if she eats anything it makes her feel incredibly sick. She is going crazy as she is starving. The nurse for day doesn't seem to care or be worried but Khya is. Any suggestions to help her be able to eat or deal with her stomach would be great

If she continues to improve we can go home Monday possibly, but I am worried that her not being able to eat could be an issue. Also worried about her transition from PCA Morphine to pills. Currently gets Vicodin by mouth and then the PCA. When she goes off PCA do they give her Morphine by mouth or just the Vicodin. Very hard seeing her hurt. Though am impressed at how well she has done and how quickly.

Thank you all for the thoughts and prayers. Hope everyone is doing well.

Jules

valleygirl
09-25-2009, 09:25 PM
Jules,

Sounds like Khya is doing great. I'm a little over 2 weeks post-op and it sounds like some of the things/fears you are feeling are what I went through.

I had the itching too - on my tummy, on my legs, on my back..everywhere. The benadryl helped me a lot. I only got it maybe once or twice a day, but I was told I could have it every 4 or 6 hours (can't remember exactly). I'm still using it now, it but only at night. The itching isn't as bad as it was except on my back all around the incision. So I also put some body cream that they gave me in hospital on my back (not on the incision, but around it) and it too helps the itching a lot. The body cream seemed to help more than the lotion.

As for the morphine, when I left the hospital after 5 days, I definitely still needed it. I got a prescription for pills and that with a prescription of hydrocodone works wonders. I'm still taking them both. No problems at all.

I hope this helps you or at least alleviates your worries. I'm sure with your help, the doctors and nurses will find the right things to help Khya stay comfortable.

Khya is doing amazingly well and I'm sure she will continue to progress.

Best wishes to you both for continued progress, comfort, success and healing!

Hugs,

JenniferG
09-25-2009, 09:58 PM
Did they say which drugs are causing the itching? I know some antibiotics cause me to itch, then my skin looks sunburned and peels off. Hopefully they can eliminate the drug responsible and change to another type if necessary.

The food problem may also be drug caused. Hopefully once on oral painkillers, this may ease. Every day is different at this stage, so don't give up on going home Monday, because she maybe a different girl entirely by then!

Most of these problems are short lived and then forgotten. Apart from these annoyances, she sounds like she's going fantastically well. Congratulations to you both!

jrnyc
09-26-2009, 01:37 PM
Hi Jules
congratulations on khya doing so well!

i used to get extremely nauseous from ANY form of morphine...& some pain meds made me itch...not vicodin, but percocet (sp?) used to make me itch like crazy..i just wonder if any of the pain meds are to blame...i know everyone is different..i have a friend who cant take vicodin....

best of luck with all of her recovery...
jess

kt2009
09-26-2009, 04:07 PM
Jules,

I am now 4 weeks post op. I was very nauseas day one through three. And then they took me off the liquid diet and put me on solids and that was worse b/c the food was so bad! I ended up requesting the broth from the liquid choice! But I also ate what ever tasted good...one day my husband brought me a Mcdonald's cheeseburger and a vanilla shake...I only ate half, but it tasted good! I also ate a lot of yogurt (and still do). My husband even brought some in to the hospital and they stored it for me in the fridge. This can help if you're taking antibiodics.
My appetite even now is marginal (and I LOVE to eat!). I tend to feel hungry, but it only takes about five bites to make me feel full. I dropped 15 pounds and I'm just making sure I don't drop any more. I eat small meals about 5 or 6 times a day. I think it's because of the pain and the pain meds!

Interesting...my IV kept sounding off as well...totally annoying!

Good luck...she sounds like she is doing great!