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pmsmom
09-27-2009, 09:41 AM
Wanted to take a minute to check in and thank ALL OF YOU for your support and help.

She had her spinal fusion at Georgetown Hospital with Dr. Lauerman on 9/17 and came home 9/22. She was fused T-2 to T-11.

All in all, things went well. There were a few issues to address--transient kidney dysfunction, anemia, and currently is being monitored hormonally for an elevated prolactin level (the evening we got home, we noticed her left breast was leaking clear fluid). The following day, her GP ordered some blood work and found an elevated prolactin level (hers is 34/normal is 24 or less). He and the surgeon will be in communication over the next few days to determine whether or not she should have an MRI for a possible pituitary cyst or just to redo the prolactin levels in 30 days.

I will check in when I can--I'm sure all of you remember those busy days and first weeks home.

But I wanted to say that I could not have gotten through this without all of the support and information from this forum. You all have been a real blessing to me.

So thanks again to everyone!

Marian
PS--We even had the big "BM" on Friday. I highly recommend Miralax (along with pericolace and fruiteze). :) But now we're just back to Miralax and fruiteze.

Pooka1
09-27-2009, 11:24 AM
Great news, Marion!

Onward and upward.

laurieg6
09-27-2009, 01:58 PM
Congratulations! I hope her recovery continues to go well and her hormones become more regulated.

All the best,

pmsmom
09-27-2009, 05:59 PM
Thanks, Ladies!

I will keep everyone posted.

And for those of you who are facing this surgery with your child sometime in the near future, this is a great place for support.

And when the time comes, you will be amazed at the strength God gives you to step up and handle this. I was so afraid (mainly of her allergies to medications and being able to care for her afterwards). But that strength is given to you when you need it the most!

I'd say the two most helpful pieces of advice were 1) find a scoliosis specialist to do the surgery and 2) be there in the hospital for your child to advocate and help care for them. The nursing care she received was great, but the nurses and techs cannot be there for your child 24/7. My dh came so we were able to take turns being with Paula so she was not left alone (although I stayed the nights to help with toileting).

And the lists of questions, things to get for surgery, etc., were SO helpful. I think we pretty much had everything we needed for a smooth transition at home.

Next, onto weaning meds. She's currently on 1 oxycontin 2ce a day with percoset for breakthough pain and some anti-nausea meds. She's only really been taking the oxycontin and sometimes the anti nausea meds. So I will be talking to the NP this week to find out how we can wean her down on the oxycontin.

WNCmom
09-27-2009, 08:55 PM
Glad it all went well! Thanks for letting us know.

Mary Ellen

pmsmom
09-29-2009, 09:34 PM
Thanks again!

Anyone have any suggestions as to how to start weaning off of pain meds? She's currently on 1 20 mg oxycontin in the am and one in the evening. She was given percoset for breakthrough pain (never really needed to use it much--in fact the dose says 1-2 pills every 4-6 hrs. for pain--when she needed it, we might give her either 1/2 or 1 tab and that did it). And we'd only give her the percoset if we had to go on the car ride home or if we went to the doctor's.

Any suggestions will be very much appreciated. I will also be calling the NP on Friday for suggestions. I think I'd like to start on Monday though.

Paula will be 2 wks. post op on Thursday.

TIA!

laurieg6
09-30-2009, 03:56 PM
We started spreading out the doses. First we stopped waking him up at night. Then just increased the time between the doses a little bit at a time. We kept up with the tylenol though, and just did this with the narcotics. I think by 2.5 weeks post-op, he was totally on just the tylenol and dealt with some increases of pain by walking more. Walking really seemed to help the most after the first couple of weeks.

Take care,

pmsmom
09-30-2009, 07:46 PM
Thanks, Laurie.

It's kind of confusing b/c she's on the 1 oxcontin 12 hrs. apart. We have the percoset for breakthough pain, but she's never really needed it.

I'm thinking the NP will probably suggest dropping out the am dose of oxycontin and replacing it w/percoset every 4-6 hrs, then back to the oxycontin at night.

Oh, well, I will check w/her on Friday.

babachi
10-04-2009, 07:55 PM
Marian!!
I didn't realize Paula was having her surgery. I'm glad things went well!!
Bethany

pmsmom
10-06-2009, 08:43 AM
Thanks, Bethany.

After the debacle last May where we postponed her surgery b/c of anemia, I didn't make an announcement as we had the acne issue going on and we weren't sure if surgery would again be postponed b/c of that.

What's weird is that her acne seems to be better after the surgery. Maybe b/c her hormones were out of whack after the surgery.

So I kept quiet and figured I would post afterwards.

But I never forgot the support I found here as well as the descriptions of what to expect after surgery. Those things, as well as prayer, sustained us all.