Rough day, need encouragement!

[Fingers Crossed]

Hi everyone:

My daughter had her fusion surgery (T3-L1) just a few days ago, on Monday, June 21. She has done well and will likely go home from the hospital tomorrow. Today, though, was pretty rough for her. She had several spasm episodes (doc and nurses are trying valium and trying to get the correct dose.) She also needed a suppostory to get her bowels moving (it worked) and she was feeling the need to urinate so frequently (catheter has been out since yesterday) that I insisted on a UTI test (so far tests for that are negative.)

She had a couple crying episodes and talked about how she wished she had not had the surgery, that it was a stupid thing to do, which of course broke my heart.

Any advice for me? I know that we should expect a rough 3 or 4 weeks and i need some new tools in my mommy arsenal to get through this! I have read in other threads, for example, that a heating pad might help with spasms. I also wish I could find a way to convincingly tell her that this very likely has saved her from much pain and deformity later.

Thank you!

Jill, mom to 14-year-old recently fused daughter

[jrnyc]

oh Jill...having worked with kids all my adult life, am trying to think of what you can say to ease her sorrow and pain right now...you know she will feel differently once the worst pain subsides...
i think you can just try to reassure her that what she is going through now happens to everyone who has this surgery, that she is going thru the worst right now, and it will get better..., that she needs to hang on to the good things that will be coming once she is healed, that her world of activities will expand the better she feels and the more healing that happens...
am wondering if the best thing would be to have her communicate...by e mail, phone, whatever...with a teen who has had the surgery and healed...kids often take advice from other kids in a whole different way...and it might do her good to find her a scoli friend who has been thru it and come out the other side!

maybe you can find one on this forum...? or through another parent on this forum...?

best wishes to both of you...
jess

[scoliboymom]

My son would get so angry with me in the hospital. I couldn't do anything right for him. He doesn't really remember any of that. Apparently it's very common for the child to vent in this way and it's easy to do it towards the people who love them because she knows you are standing behind her no matter what.
As soon as we went home things improved dramatically after the first 24 hours of adjustment. Still not easy but hugely better then the hospital stay. I think just being home will help.

Ramona

[ddb]

Once her meds are right she will be able to relax a little. DD's surgery was in Feb'10 and it wasn't always great, but staying ahead of the pain made it work. She too had spams and they get better with time. When she was on oral meds one was every 4 hours and the valium for spams was every six hours. She didn't like the Valium - it made her sleepy. In the hospital she was on schedule with the doses, but once home a week she started extending the times. I believe she was completely off meds at 3 weeks home - only needing Tylenol.

At home I let DD (16) be the guide to what she needed and when - it was only two meds - one for pain and Valium for spams. I was very surprised how fast she was off the pain meds.

Every pt is different, but from what I've read on this forum kids heal fast. Your DD is on the healing side and every day should get a little better.

Best to you and your DD for a fast recovery

Dee

[Fingers Crossed]

Hi!

We have been home for about 24 hours now, and I wanted to let you know that things are much better. She takes oxycontin every 12 hours as the "big gun" painkiller, then oxycodone and valium as needed. So far, she has not needed the valium at all, and has taken only a few doses of oxycodone. Of course we are asking her often how her pain is, but she says she is feeling really good and that her own bed feels infinitely better than the hospital bed. I am so relieved, and really appreciate your thoughts.

Jill