It is considered pre-op, as we are doing a lot of seizure/brain testing. We are doing a LT VEEG, MRI, and PET scan. They are hoping it will isolate a seizure starting point that they can resect. If not, then we are talking seriously about a vagus nerve stimulator.
We are scheduled for at least one overnight, and up to five or so according to the scheduler. They want to capture at least three different seizure types or questionable activities.
This is our first stay at UCLA (Mattel Children's). I am used to CHOC, I know how everything works there. For $5 you can order a parent tray at each meal. There are chairs that fold out to beds. There are showers for parents. There are volunteers on each floor so that you can take a break if you are alone with your child. I will be alone with Emily the entire stay. DH now works from home, and we have Jacob to deal with. So I will be stranded there the entire time, and am trying to plan for it. PElizabeth, Heather, I need advice! Please give me your insight as to this particular hospital!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
11 comments:
Zoey's Heather hasn't been to this hospital, I don't think. I'm so glad they are doing testing. I really need to get Jax there, they will probably help so much!
I just found your blog. Thanks for leaving a comment on jackspeanut!!! I hope you can get some answers for the inpatient stay!! Good luck!
We were there for,I think 3 days.All of them,honestly,easy.The nurses were wonderful.The Child Life people,wonderful.And when you think of Mattel Children's,thinks toys.Although Zoey wasn't into toys then,still really isn't,boy did I see some of the kids receiving some cool things to ease their time.Overall,really great experience.
Prior to her stay there,we had tons of EEG's so we were prepared for what we were use to but their way of doing the leads was totally different ... a bit time consuming but to ensure that all those suckers stay put,they need to do this adhesive we had never seen before.Just a heads up on that.
As for the rest of the tests.Fairly straight forward.
Having been strictly at CHLA most of her life,and loving it,most of the time,I was amazed at the level of professionalism and how UCLA's differed from CHLA,from the get go.UCLA rising to the top.Feels disloyal to my home away from home but really the truth.
Remember,Westwood is right there.If you can get someone to give you a break you can just pop out onto the street and have oodles to choose from to eat and do and just escape for a change of scenery.
Feel free to email me if you want,I know Emily and you,are in great hands.
Praying the stay goes well and you get some answers. Hugs.
Wow, such fun things in the life of Peanut!
Happy Birthday!!!!!!!!!!! first off, to your sweet girl.
And oh, my goodness, that wish sounds just wonderful! How exciting.
About the bath chair, I'm not sure how much it would cost to send but we'd be up to working something out if it means a special guy can find use out of it. for sure! Email me if you think the family would be interested!
breefro at yahoo.com
Love, Bree
I don't know anything about UCLA but i really hope that you guys have a good experience.
I hope they can help find a way to control the seizures without a Vagus nerve stimulator.
no advice...
just prayers you get the answers you need!
I've heard great things about the VNS - it has really changed things for some kids. Good luck, but I'm glad this can be a planned stay, not emergency.
Thinking of you Xx
Prayers are with you and Emily!
Praying this will be a solution!
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