Surgery Tuesday, 15th

[AC13]

Okay, we're almost there. AC is scheduled to be at the hospital 6:00 AM Tuesday morning. She had to wear a heart monitor for 24 hours - nurse who took her blood draw noticed an irregular heart beat. Cardiologist read it and said it looked fine. Posterior fusion from L3 to T6, titanium rods and pedicle screws. I have been fine until these last couple days. My patience level is REAL thin (my poor family!) School has been great - they did a temporary 504 Plan which will give her accommodations because of medical reasons. Will update later. Thanks everyone for information and support! God bless!
Melinda

[blairf83]

Good luck!

[lrmb]

All the very best, we will be thinking of you and saying extra prayers, let us know how it goes. Take care ~Laura

[susannajon]

Hi Melinda,

My little one will be having the last of her pre-op testong on Tuesday... surgery is March 9th! We will be praying for you and we wish you the very best!

One mom to another...

Susanna

[SarahH]

I am thinking of your daughter!

[SarahH]

I am thinking of your daughter!

[jc3]

hi susanna
i saw your post that you are going to do pre-op tests on Tuesday, let me know how it goes. It will be a long day and alot of waiting around. I was not happy when we went we waited a long time at the pediatric clearance in the hospital i was getting very annoyed. Let me know how everything goes. How is everyone's nerves at your house with everything getting so close.
Good luck
Jennifer

[susannajon]

Hi Sarah, Thanks for your thoughts!

Hi Jennifer, How's Nicole feeling? My daughter's doing really well. We have finished up with all the pre-op stuff that can be done in Baltimore. She donated blood this morning. I think it was easier for her because my husband and I have donated blood in the past, and she's gone with us, so there was no great mystery. She was a little jittery, but she did beautifully. She was more interested in the color of her bandage (lime green, her favorite color) and what they were going to give her as a snack (Famous Amos cookies and pretzels).

We are in a pretty good place emotionally. It makes it so much easier when you know you've done your homework, and you really feel like you're putting your child's life in the most competent and experienced hands. We feel absolutely comfortable with Dr. Boachie. I just wish I could protect my daughter from the pain those first few weeks. That's the only thing that's keeping me up at night.

Susanna

[jc3]

hi susanna
oh that's good you were able to do the post op by you. That is great that she was able to donate, i don't know if you remember my nicole ended up not donating, she was hysterical when we went and they wouldn't do her. Then i couldn't find out if i was a match to her, ended up i wasn't, then my husband went to donate and he couldn't. I was freaking out. Needless to say she never even needed any blood during her surgery, i was thrilled. A few days after while in the hospital they said she was alittle anemic and if they had some of her blood they would have gave it to her, but they waited and a few days later the levels were better.
glad to hear you guys are doing good emotionally. I know you feel helpless that they are going to go through pain and no one wants their child to have to go through any pain, but she will do fine, just keep thinking of the positive outcome of all this.
Nicole is doing really good. She is at the mall with her friends today. Everytime i look at her i am still amazed on how great she is doing.
keep in touch before the surgery.
jennifer

[susannajon]

Jennifer,

I meant to ask you, what exactly did they do when you went for your pre-op visit? We've already done the blood donation, an MRI, pulminary function testing, EKG, and an echocardiogram. What's left? I'm just wondering how much we'll have to go through when we're there.

Susanna

[jc3]

susanna
i think that was about it. After those tests we just had a clearance by the physician then after we left the hospital where we had the tests done we went over to boachie's office and he took some bending x-rays and that was it. It sounds like you guys are set to go.

Make sure you pack comfy clothes for yourself.
jennifer

[susannajon]

Hmmm, I wonder if we really have to go up on the 2nd for a pre-op visit then? He's already taken bending x-rays of her. Maybe we can just call and verify that he's got everything he needs and skip the 4 hour drive to New York. Keep your fingers crossed for us.

Susanna

[jc3]

susanna
i would definitely check that out. It can't hurt to ask them. I really can't think of anything else they did that you didn't mention
let me know what happens
jennifer

[susannajon]

Thanks Jennifer! I'll let you know what they say. Susanna

[pal]

Good Luck Susanna & AC.

[susannajon]

pal, Same to you!

Hugs a kisses, and EVERYTHING crossed for you as well!

Susanna

[AC13]

Thanks for the thoughts and prayers - they worked! AC did really well. They gave her valium when she first got there - she wasn't overly nervous but anxious. This made her VERY sleepy and she was barely awake enough to give us kisses. They kept us updated every hour and a half or so. Sounds like the roughest part was getting the IVs going but she was out for that. She was in for 7 1/2 hours and they ended up getting 30 - 35 degree correction. Not as good as hoped, but I'm not complaining. She woke up and was saying some pretty silly things - talked about her pet, named Slyle - a naked mole rat! (She doesn't have a naked mole rat and never will)! I wrote this stuff down but I kinda wish I'd had a tape recorder. She came out of anesthesia asking over and over "What happened, I remember talking to you in that room, what happened?" We stayed at the hospital until yesterday, mainly because she was anemic. They gave her one pint of her own blood but she had kind of a reaction when they went to give her the other pint. They aren't sure why. She had to be taken off of that and also the morphine. She was in quite a bit of pain for a while until they got her on the correct meds. They got her sitting up on day 2, then walking to a wheelchair and going for a ride the next day, then walking with a walker and then up and down a couple stairs. Her oxygen level kept dropping when they gave the meds and we'd have to wake her enough to get some deep breaths in her. She would sing "Mary Had a Little Lamb" to get the breaths regulated - so she didn't hyperventilate. It was cute! The hardest part was the drive home - getting in and out of the car. Now, we're still helping her get up and down off couch and to bathroom but she's walking pretty good on her own. Meds are keeping her pain at a low level and yes, pillows are a must have. Thank God it's over! There is no inkling of what it's like until you've been through it, but I have to say it was not as difficult as I imagined and I was amazed at how strong my "baby" really was! Best wishes to Susanna and Pal! (Sorry to go on and on)
Melinda

[susannajon]

Melinda,

I am SO GLAD to hear you and your baby coming through with flying colors. It means so much to me as a mom to hear from you and to know that you are all doing well. PLEASE tell us everything! We are starved for details and remember how helpful it was to read other posts just like yours from moms bringing their babies home after a successful surgery. Please let us know if there's anything at all we can do to help over the next few days and weeks. I'm glad to do research or make phone calls for you. Just let me know.

XOXOXO,

Susanna