long 2 weeks

[Rylanesmom]

This is going to be a long 2 weeks!  My NS said take as little pain meds as possible in the 2 weeks prior so that they will better be able to control my pain...this makes me miserable...which makes me have a very short fuse.  I am scared of the unknown and have never been put out so the more I read the more scared I become yet I am too scared not to research...haha vicious cycle.  I did go today and buy ear plugs, med refills, and that odd "shampoo" that I am to use the last couple days to get the bacteria off of my body.  It really isn't soap so I guess I need to ask if I use soap and then follow up with that stuff.  I just ordered my mother and my daughter chiari tshirts for surgery day....and one for myself for the flight home.  I can't believe that they are not vnecks....hello....chiari zipperhead means they cut the back of your head open...alterations store I will be coming.  I need to come up with some fun trinkets for my 7 year old that will not be coming to Colorado....10 days without Mommy is a lot....notes of love and small gifts might help.  Anyways....just needed to let out some air....I am so scared but getting prepared.  Lung Dr tomorrow and Neurologist Tuesday.  I pulled up my Insurance page just to see what is racking up and holy cow I can't imagine how much I am going to be worth by the end of this.  I love the song remind me who I am by Jason Gray right now...I know all of this is temporary and keep trying to remind myself who I am in Gods eyes.  I can give myself many names that are not the names God has chosen for me.  This is a lonely place and I need to remember who I belong to.

[selmaS]

  My DD was older then urs, but they get concerned to the same degree no matter what age and need to know u r ok...and I had a certain message to give her as soon as I woke in recovery so she knew I was ok....not sure if u remember from my journal...but my message to my DD was " the cala lilies are in bloom again" a line from an old Katheryn Hepburn movie DD and I love to watch together and we love that line....lol...it was the first thing I said and DH was confused as heck...but the thing was I knew she could not come for a couple of days and this was one way to help her know I was still me.....

  I am sure ur DD may like this since she will not be with u....Just a thought <3

[Rylanesmom]

Thank you everyone:)

http://www.zazzle.com/never_give_up_hope_tshirt-235414374143538857 daughters Tshirt
http://www.zazzle.com/brain_surgery_survivor_tshirt-235653012583846498
My Tshirt
http://www.zazzle.com/mad_chick_2_chiari_malformation_daughter_tshirt-235114352285456728
Moms Tshirt

I love the gift ideas too.
We exchange "notes" on a chalkboard in my living room so more notes and more creative will be good for her.
I also need to see if I can get a skype app on my iPad because I could then video chat with her.

[linnielou232]

I love the idea of the shirt's.  You'll have to post one.  We should all get one made so more people are more aware. I just loved Rahe suggestion of gift's.  I actuallly had a friend do this for me when I got out of the hospital.  Every day I was able to unwrap something.  It gave me something to look forward to.  I don't know how old your DD is, but here before my surgery we had a hair shaving day and I let my Grandkid's help shave my head.  We made it fun so they wouldn't be afraid.  I also have to say after reading your post I noticed you have a very strong faith.  I know this is easier said than done, but when you head into surgery remember you are in GOD"S hand's and he is do what is best for you.  We are all here with prayer's in our heart's for you.  I have had surgery and now recovering and I have to say it is worth the journey and the pain.  Look forward to the day without a HA!!!!   Better day's ahead.  God bless you.  Please keep us updated.

[megthp]

Be strong, Rylanesmom and have a positive outlook as best you can. It is scary going into it, no doubt about it, but I found focusing on positives before and just after surgery really helped pull me through. There are a lot of scary stories and posts out there, but believe it or not, the success stories far outweigh the negatives!! Stay positive (much easier said than done...)

I would write lots more but I'm wearing myself out. I wanted to caution you on narcotics tho. This can be a tricky communication. I've been on narcotics for about 17 yrs for migraines (traditional migraine don't seem to work, no matter how many times I try!). Post op, my docs and nurses had a hard time finding a dose that would work for me. The only thing I could do was tell them that although I don't take narcotics all that frequently, my tolerance is high and I was very uncomfortable for a very long time until they believed me. Pain is inevitable, but encourage them to increase your doses by small amounts until you find relief without being so zonked they can't interpret your neuro test results.

Want to write more, feel so empathetic for youissing your little ones, but my eyes are closing all on their own... Stay positive

[Rahe28]

Hi there. I'm so sorry to hear of your fear. I'll be praying for peace in your heart before your big day. I haven't had surgery, but I do have 3 kiddos. so maybe I can give you a few ideas.

If she takes her lunch to school pre write enough little sticky notes for whoever is taking care of her to put in her lunch box each day. I do this and my kids just love opening their lunch box to find a special little note.

Take a special picture of just you and her hugging and place it next to her bed so that she can "see" you whenever she wants or needs too.

If she enjoys crafting things....leave her some paper and crayons and glue and glitter in a special bin so that when she wants to make a get well card for mommy the stuff is already there.

Stick a note on the bathroom mirror where she washes her teeth, so every morning while you are gone she will she your words " I Love you".

You can get a dry erase calendar from the dollar store. Take it and have her help you set it up for the Month and the date you have your surgery and the day you will be returning and allow her to cross off the days herself.

You could also buy some small little gifts and wrap them up such as coloring books and colors, a new brush, a new bow for her hair...well u know the things your DD will love and place them around the house before you leace in spots you know she will run across during the time you are gone. When she finds one and opens it ...it will make her feel like you just came home and brought her something.

These are just a few ideas. I hope the help a litttle. Good Luck with it all. Oh, and maybe go with your DD and have lunch out or a maincure before you leave....(if you feel well enough). YOu will need a day of relaxing before you head to surgery anyway ...why not make it a mommy daughter day :)

[irislita]

...do not read about this operation anymore.i havent read anything before and it was the best i have done.and dont think because others feel in some way u feel the same too...everybody is different and heals different.and then when u r post op and have issues u write us or ask ur ns...
I think i had this shampoo soap whatever too...i hated it as it would dry out my already dry hair,but what is necessary is necessary.i know the waiting is awful...but ur great day will come.