We have a surgery date!

[dancermom]

Thanks for the info regarding the shower seat and the toilet seat. I have considered buying both things trying to make things as easy for Elizabeth as I can after her surgery. But, it sounds like it might be better to wait and see what works best for her as she might not need those things. If she does, then I can always send my husband to get them.

Ann, sorry to hear about your Elizabeth's low iron. How is she handling getting stuck and the blood thing? My Elizabeth is very nervous about the iv and blood being drawn at the hospital. I will agree with you in prayer that this low iron thing is not a big deal and it won't cause any problems. I hear you about everything being magnified these days. That is how I felt about the protein in the urine thing earlier.

Please let me know how both Elizabeth and Briann do with their preop appt. today. We still need to schedule a hospital visit so my Elizabeth can see the pediatric ICU and see where everything is going to happen. I think we are going to try to go on Monday night.

Ann and Cheryl, make sure to take care of yourselves over these next days. This is going to be hard on all involved.

-Connie

[nikyergen]

To All-I wish those of us that have been there, done that, could be there with you to hold you. It is scary. But, wait until you see you child's NEW BACK. That's what we called it at our house. When they wheel you child into recovery and you get to go in and see them, you will probably cry in joy. I know I did. Nervous, upset, felt like I was going to get sick, YES, YES, YES. The deep breath of relief will come when you see your child right after surgery.

For your nervous child about IV, surgery, etc., tell the doctors. They are all very good about prescribing things that will help them relax. They don't want to have a scared child, so they will do everything they can to help. Let your child talk to the various doctors at the pre-ops, let your child express their fears. Your child will feel much better about it.

My best suggestions for you moms, it worked for me. I made sure I took time for myself the last few days before surgery. Something simple. Like a tub of hot bubble bath, my favorite beverage, a good book, and a LOCKED bathroom door. I found that it gave me privacy and time to be okay with surgery. Try to get as much rest as possible. If you are like me, you haven't been getting much rest because of worry.

Please keep us all posted, as you are on our prayer chains.

God Bless You All

'til later,
Nikki

[vsm4121]

My heart goes out to all of you, this is such an awful thing for a child to have to go through.

My younger daughter will be put in her brace tomorrow and my stomach is in knots! Thinking about how uncomfortable she is going to be on top of all the pain she has has me close to tears. I only hold back because I'm at work. Her pain isn't from the scoliosis, but she has Osteoporosis on top of it and she's only 10! She's got 3 small fracture on her spine and because of her weak bones, the Scoliosis has just taken over. But, we know we are very lucky because there are many kids out there who are in worse situations and we count our blessing with that.

For you Moms who have children going through the surgery, kids recover very quickly! My oldest daughter went through Open Heart Surgery in 2000 and I was surprised how quick she wanted to get back to doing some of the regular things she had before.

I'm so happy I found this forum, it's hard when you don't have anyone who understands.

My prayers are with you all!

[Cheryl M]

Kris,
Hope you got my phone message about tomrrow. hOpe all went well with your son.

Our pre-op went just fine. Lots of waiting. Dr. said probably fuse t4 to l3 just like we thought. We have to be there at 5:30 and her surgery is at 7:30. She should be done by 1:30. She should go to recovery and PACU and then on to a room within a few hours if all goes well.....I'm counting on it that it will. They gave us numbing gel for her hand the morning of her surgery so she won't feel the IV go in and a scrub for her back. That's about it. They didn't take blood or anything. We toured with a little girl who will have her surgery the Monday after Briann's. They were a sweet family. I feel much better now that that's over.

Cheryl

[AnnLF]

Hi All,

Lots of waiting??? Can't imagine that.... Just kidding! We left the house at 8:30 and got home at 5:30. Of course, nearly three of those hours were spent in the car driving in rush hour during the first snow of the season.

Glad it went well for you Cheryl -- didn't you find it oddly comforting to see tons of other folks who have similiar (or worse) problems than you? How did Briann handle it all?

Ours was fine, too, I guess. The doctor will be doing both the front and the back and I was naively hoping it was just going to be posterior. He says he'll fuse from T2 to L4. We think he's marvelous, and feel we are in the best of hands, so that sure helps ease the nerves. During the course of the day, she had a blood-draw, chest x-ray, blah, blah, blah....but didn't get any of this cream you're describing for Briann's hand. Maybe I should make a call on that one. Does she have to do an enema the night before? You can imagine that that one went over real well with Illinois Elizabeth!

Nikki...thanks for your B positive offer! We're in good shape now, with Elizabeth's brother coming home from college tomorrow. We already told him: no beer drinking with his old high school gang this weekend! We had a kink (to put it mildly) that really threw me for a loop earlier today. My B-positive cousin (male, 52, with a history of heart valve problems) gave blood for Lizzie on Monday. Yesterday, he was experiencing light-headedness and his heart was beating strangely. Well, it got worse and he was taken by ambulance to the hospital where they had to use the "paddles" on him to get his heart beating normally. Apparantly, the dramatic decrease in blood volume threw his heart into an irregular pattern. He was somewhat scolded by his cardiologist for not checking with him before donating the blood. He is still in the hospital and is hoping to get out by tomorrow. Can you just imagine how bad I feel? I didn't even tell Lizzie.....

So, Thanksgiving is a week from today. Connie and Cheryl, we have three beautiful daughters who are going to be just fine and we can all be thankful for the blessings of great medical teams who will get our girls through this. BE STRONG!
With prayers for our November girls, Ann

[AnnLF]

Cheryl,

I almost forgot. Illinois Elizabeth's surgery is at 7:30 and we, too, are to be at the hospital at 5:30.....

Ann

[dancermom]

Believe it or not, my Elizabeth's surgery is also at 7:30 am so we have to be at the hospital at 5:30 too. Nothing has been said about an enema or anything like that - I hope we don't have to do that.

I think our doctor is planning on fusing T2 -L1, but I am not for sure. I am hoping we can get some of that numbing cream too. Nothing has been said, but I think I will call the orthopedic office and talk to the nurse. My Elizabeth broke down crying last night and it broke my heart. I know our girls will make it through this and so will we, but it sure is hard.

I donated blood today and that was an experience as I have never done that before. I figured if Elizabeth can go through back surgery then I can donate a unit of blood. Neither one of us are too brave about these type of things.

Take care everyone and know you are in my thoughts and prayers.

-Connie

[AnnLF]

Connie,

Okay, so we're all on for a week from tomorrow. Same date, same time and same names....incredible.

It's so sad when your daughter cries -- you just want so badly to take their place and take away the fear they must be feeling. My plan of attack these days? Divert, divert, divert. We've spent the weekend putting up Christmas decorations...the earliest we've ever done it. My niece is getting married on Friday, and we'll have a houseful of guests so I figured this was our only window of opportunity. Sure didn't want to wait until we get home from the hospital.

Speaking of hospitals, my cousin was released Friday evening. Realistically, I knew I shouldn't feel guilty, but nevertheless, the poor guy spent 3 days in the hospital all because of donating blood for Lizzie, so emtionally, I felt terrible. It certainly was a little kink we didn't need, but he's fine, so we're relieved.

BE STRONG!
With prayers for the November girls, Ann

[dancermom]

Well, surgery is one week from today and actually starting about the time I am writing this post. That is so scary.

We plan on visiting the hospital tonight to see where Elizabeth will be recovering. I am not sure if they will show us the ped ICU or the patient floor or what - maybe everything. I am hoping this visit helps and doesn't make Elizabeth more nervous.

The hard thing for us right now is all the "lasts" - like tonight is her last jazz class until the summer or whenever. Tomorrow night is her last ballet class, tomorrow is the last day of classes until she has recovered - just things like that. Are you guys going through that too?

I am praying that our girls stay healthy and that our families stay healthy so the surgery and the time that surrounds it will go smoothly and have no additional problems.

Ann, I know you feel a little guilty about your cousin and the donating blood problem, but he wanted to do this for your daughter. Thankfully he is doing better as you don't need additional emotional things to deal with right now.

Cheryl, how are you guys doing? Glad your preop visit went smoothly.

Take care everyone and I hope you have a good week. I have a feeling that it is going to go by way too quickly.

Connie

[mumof5]

I haven't read all of this thread but I would just like to make a cheap suggestion on the toilet/shower seat. Buy a cheap plastic outdoor chair. Make sure it has non slip pads on the legs and holes in the seat. This is what we used in the shower for my daughter, she didn't need a toilet but needed a little help getting up and down for the first few days.
After she had her surgery I put a baby monitor in her room and kept the other part with me so that I could hear easily if she needed me. Being a single mum of 5 there was times when I had to leave her inside alone, like to hang out washing, and it made us both feel more secure knowing I could hear every sound she made and she didn't have to try to yell for me.
Hope this helps.
Best wishes
Cheryl

[dancermom]

Just wanted to check in with everyone as surgery is getting very very close. We had a call from the hospital yesterday and they want us there at 5:00 on Monday morning - and I thought 5:30 was going to be early!

It seems like we are trying to squeeze so many things into these last pre-surgery days and it is exhausting! My daughter wants to spend time with friends and I am trying to do some shopping. Then we are also going to decorate for Christmas this weekend.

Ann, Cheryl - how are you guys holding up? This is all becoming so real and so close. How are your daughter's handling it? My Elizabeth is getting very very nervous. It is going to be hard to stay calm on Monday morning as we are doing all the "before surgery" things like lab work and the iv and changing clothes. I just hope I can hold it together until she goes back into the surgery room. It just hurts my heart to know she is going to have to go through this. I know you guys must feel the same way.

Just know you and your daughters are in my thoughts and prayers. Talk to all of you soon.

Connie

[nikyergen]

To All-My prayers are with you as you go through this trying time in your life. God will be there by your side and holding your hands.

Please keep us posted on how your young ladies and yourselves are doing.

God Bless You All.
Nikki

[KRIS ATKINSON]

Congratulations that the day is only day after tomorrow, all you November girls! God be with all of you! Keep us posted! Cheryl M, if you need me, I am only an hour or less away in NC remember! I also have 2 body pillows if you like. Erica enjoyed them mostly at home, after the nurses were done with their many pillows, so let me know if you want them or if anything you think of anything else I might be able to get to you from down the road in NC. By the way, Erica left her cushion in the van for the last few days of school, as she decided she could finally handle the school seats without it! God bless all of you! Kris

[mumof5]

I know how hard those last few days can be. Try to take some time out for yourselves as well.
When Amber was in hospital she wore a chemise type nightie, cotton ones. We found them the easiest for her to change, we she was cool she wore button up long pyjamas over the top and drawstring pyjama bottoms.
Best wshes my thoughts are with you all.
Cheryl

[AnnLF]

Hi All,

Well....we had a whirlwind weekend so far. Houseful of guests for Thanksgiving and then my niece's wedding yesterday. Everyone just left and it was very hard...my aging, dear Dad, (who lives a couple of hours outside of Chicago and can't be with us on Monday because of health issues with my Mom) held onto Elizabeth just before he left and couldn't seem to let go.

I've told many folks about the November girls and more than a couple of people have suggested that someday -- when this is all behind us -- that we meet. Cheryl & Connie -- it's been my pleasure getting to "know" you these last few weeks. You and your beautiful daughters have helped us tremendously by the mere fact that we know we are not alone on this journey.

To all of you who have added their thoughts and prayers, it touches me to the core that people in this amazing cyber-world -- who in every other respect would be strangers to us -- are behind us offering support in ways that no one else can. We all know that it is impossible for anyone who hasn't been through this with a child can comprehend the depth of what we are feeling as the 28th grows nearer and nearer.

Soon -- very soon -- we will be on the "other side" and giving back to future surgery patients what others have so generously shared with us!

We are heading downtown Chicago late tomorrow afternoon, going to the famed Walnut Room at Marshall Field's for dinner and then checking into a hotel across from the medical center.

God bless you all -- expecially the Elizabeths and their team of surgeons.
And know that in Chicago vigorous, heartfelt prayers will be sent to the Lord above for Briann/Elizabeth of North Carolina and Elizabeth of Oklahoma!

BE STRONG! Love, Ann