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When I had surgery, a nurse friend told me to ask for the pain meds b4 I need them, as they are usually prescribed PRN (as needed) and have to be ordered up from the pharmacy.

So, if she can have every 4 hours, start asking at the 3 hr mark.

(((NO & DD))) I'm so glad to hear this. It warms my heart.

I am stunned you have to see your child in pain though. I thought the docs would have a better handle on this. There was no reason for her to suffer through an MRI like that. She should have been mildly sedated at least. I understand why they did the MRI, and I know she needs to be still, so happy about the results. But dammit, come on. I'm an LPN - mot for pediatrics. I just hate to see pts in pain.

How is she getting her pain meds ? In a pill form ? Is she on a PCA pump ?

Does she have like a short acting or immediate release pain med & a long acting one ?

For the MRI, they offered to sedate her or give her IV Ativan. She was still SO groggy from anesthesia that I honestly thicuht some IV Ativan would knock her out. Mind you she also had IV meds including dilaudid, tyleonol, toradol, and a steroid just before going down there.

And I think it would've been fine until the MRI machine stopped in the middle of the scan. They had to pull her out and mess with it and try again. And it still didn't work. We waited around some more. By that point, she was still lying perfectly still because she knew she had to or we had to start over... but she was crying. Just big tears rolling down her face. I ended up sitting beside her touching her legs so she knew I was there. They finally said they thought it was working again and I told them if it wasn't, we were done for the night and they could sedate her this morning to do it. But it worked and they finished. Thank goodness.

For pain, she's on IV dilaudid. She can have it every 4 hours as needed. She's also on the max dose of Tylenol and toradol for her weight and is also on a steroid and anti-histamine. The toradol has to be be bumped back down to ibuprofen to discharge.

The dilaudid works beautifully, but obviously she can't discharge on it. One of the resident Peds docs came in and discussed changing her over to oral oxycodone which seemed like a fine idea to me. He said he would discuss with his higher ups. Well, he actually discharged the order for dilaudid and didn't add ANYTHING to replace it. He didn't tell the nurse OR me he was doing this. So 4:00pm rolls around and it's been 5 hours since she had dilaudid. We were trying to distract her and get her to 6 hours. But we had no clue she didn't have an order at all for anything for pain PRN.

So when we asked at 5:00, the nurse was very apologetic about the fact she had NOTHING ordered for her. Said it would take "some time" to get it sorted out. At first, I was. Ice. Then my daughter started crying. Hard. And I stopped being nice. I told her to get our neurosurgeon on the phone if she had to, but I expected pain meds within 10 minutes. Make. It. Happen.

And God bless her, she did.

Now we are back to square one. Dilaudid every 4 hours as needed, don't allow pain level to go above a 5-6, and don't try to "space out the doses". Just get through tonight and neurosurgery will re-assess in the morning. The Peds docs were told not to mess with any of her pain meds again.

Now, I gotta say... even though there was this one pain meds thing, the care here has been unbelievable otherwise. Truly, just amazing. So I have no complaints and just hope this resident learned something today.

Just big tears rolling down her face. I ended up sitting beside her touching her legs so she knew I was there

This vision just broke my heart. I'm so thankful they figured out the machine and the scan was good.

Well, he actually discharged the order for dilaudid and didn't add ANYTHING to replace it. He didn't tell the nurse OR me he was doing this. So 4:00pm rolls around and it's been 5 hours since she had dilaudid. We were trying to distract her and get her to 6 hours. But we had no clue she didn't have an order at all for anything for pain PRN.

Well I'm glad they got their sh*t together. They are correct about the pain level not going above a 5 - once it get's to high it is a nightmare to chase the pain to bring it under control.

Toradol is not controlled. Why would she need to come off of it to be D/C'ed ? It's a great anti-inflammatory med. It's not good to use long term usually less than 5 days. For someone so young and otherwise healthy - I would think she could go home with a week supply. But this is why I'm not a doc or a peds nurse.

Really NO this is great news.

Please send me the GFM link.

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Thanks for the update. I'm glad the pathology was as good as it could be. Take things day by day. Insist on good pain control for discharge.

Remember to take care of you. Always. It sounds like you need to find a quiet space and have a good cry and a nap.

We are holding you both in our thoughts and prayers.

Sounds like you're doing so well in some of the hardest circumstances people can face.

When LOs are in pain - the momma can go postal. At least this one does. You're handling everything so well - very admirable.

I am so hopeful for you guys and happy for your family.

I have to tell you, I am so grateful for the update. I've been a wreck over this, checking my computer repeatedly, looking for updates. And so, so, so relieved when I read these. I am so very happy for you, I want to come down there and bring bears and balloons and Slurpees and flowers and..

oh wait, no flowers, might make her sneeze and that would hurt.

Anyway, please be good to yourself, too, Mom. And please know that you will need lots of physical support when you get home so accept any and all offers from family, friends and coworkers. Because when your adrenal gland gets to quit working frantically to keep you going, you will be done. Absolutely done. And you'll crawl into bed with your dear sweet baby girl and you'll both sleep for 3 days straight. Not get dressed. Not take a shower. Not anything.

Let it happen. Don't fight Mother Nature. She'll win every time.

Love and hugs to you and your whole family.

J.

Thank you for the update.

You and your precious daughter are handling this with such strength and courage.

Continued prayers.

(Nightowl & DD) So pleased to hear that the surgery was successful and the outlook is good...try to stay optimistic and think that the odds are on your side.

Hugs and prayers for you both that her pain is managed, her recovery is swift and complete and you are all able to heal from the stress, worry and anxiety in the coming months.

Once you are home with her siblings you are all going to have such a period of adjustment ... A new outlook on and appreciation of life is almost inevitable.

Be kind to yourself too, learn to accept offers of assistance and take time out to deal with your own emotions x

Thank you for the update. Mark me as one who has been checking in over the weekend as well, for the update. Just glad that you had the chance to get to a computer with everything else that you're having to handle.

Your experience with the pain meds is exactly why patients, especially children, need an advocate with them, while they're in the hospital. No matter how great the facility, it's easy for busy staff/doctors to miss something, unless it's brought to their attention by a patient advocate. I'm not slamming hospitals or staff I'm a former navy corpsman and I darn well know how hectic it can be.

(((hugs))) Remember to take care of YOU too!

(((huge hugs)))

Woot woot!! After much discussion amongst the neurosurgery team, we were discharged back to our hotel with oral dilaudid as needed, plus scheduled Tylenol and Motrin around the clock. Her pain levels are much better today. She has slept more peacefully and for longer stretches. She's eating well and peeing plenty. Still waiting on her bowels to kick back in, so that might take a little help with some sort of stool softener or laxative in the next day or two.

I'll be here in Houston with her until our appointments Thursday. I'm going to start another thread to vent about some things that cannot be discussed here in Off Topic (I'll put it in General probably because it doesn't really fit anywhere else.)

Please continue to pray that the final pathology report confirms this was a low grade tumor. The fact that the MRI showed no residual tumor is such a huge plus in our favor. About 20% of these things return eventually, even if they're low grade and "all" of it appears to be gone.

What a good update... Thank you!

Go vent away... but please have a good meal first and give that baby of yours lots of hugs from SI

Thank you for updating us. Continuing to pray.

Love to you all.

Oh that's brilliant news!

More prayers, love and hugs coming your way for Thursday. ... meanwhile I prescribe extra love and cuddles while you're confined to your hotel they'll make you both feel better !!

What wonderful news! Amazing that someone can have brain surgery and be discharged 2 days later! Continuing to keep you all in my thoughts and prayers.

(((And Strength and Healing))))

It is really the best you could hope for.

The pain will improve over time.

Your baby is amazingly brave and strong. You need to take care of you too.

Fantastic update. Sending prayers for clean pathology reports.