how do you get through the week before surgery

[mibre]

My daughter is having surgery on January 4th. I am so worried and scared for her. For those of you with kids on the " on the other side", how did you get through the last week pre surgery? I'm trying to stay positive but can hardly sleep. I'm also paranoid about her getting sick before surgery and it having to be postponed. My daughter says she's scared but seems to be handling it well. I, of course, don't let her know how worried I am.

[Mary Lou]

Boy do I remember that week like it was yesterday! I couldn't sleep, I couldn't eat, I worried that I was forgetting something--does that sound right? I worried so much that I had myself sick. I lived with heartburn constantly even without eating anything! I finally told Jamie that I trusted in God and I trusted our surgeon and turned it all over to Him. I'm not the most religious person, but I felt a great sense of relief. I knew that I had everything worked out-who would get my other daughter to school, to band practice, ect.-so I turned it all over to Him and it was then out of my hands.

Try to eat right, get as much sleep as possible (you won't be getting much for the first few weeks after surgery), make sure everyone knows what needs to be done, have your house set up for your return home, make a few meals ahead of time if you can, make sure you've gone grocery shopping is done, and make sure everyone knows what your rules are for visiting while in the hospital and once you are home. Make sure no one visits who is sick. The last thing you need is to be exposed to infection. We had a small sleep-over for Jamie a week or so before surgery. That left her time to relax and be a kid, make sure she had all of her friends current e-mail addresses and just have fun. We also spent time together as a family. We went out to dinner and a movie.

You will get through this. We are al here for you. Try to update us as soon as possible after surgery. Know that our thoughts and prayers are with your family.

Mary Lou

[nikyergen]

mibre, ditto with Mary Lou. Couldn't of survived without these forums. I finally crawled in bed with Crystal one night in tears. She looked at me and said "Mom, I'll be okay. I have God on my side. He will guide my doctor and take good care of me." You know the saying OUT OF THE MOUTHS OF BABES.

Hang in there. Keep us posted on how things go. Don't be afraid to ask people for help at home, friends/family, etc. Crystal's friends, she's 17, were a great help to me. If I needed to go to town, they would come over and stay with her so I could go. Don't underestimate what her friends can do to help in her recovery. Crystal's friends were all great about this.

Nikki

[lorrie]

Hi Mibre
We didn't get a whole week's notice so didn't have quite the same sort of countdown (I had a terrified weekend with my husband out of the country). What I would advise is that if people ask if they can do anything: don't be a brave cope-with-everything person - say yes and give them something to do (ironing, cooking / shopping for those left at home etc). If all your practical things are organized then get them to give you hugs and prayers - you can never have too many of either and I'm sending you some of both through the ether right now!!
You'll be fine once you get there - you'll be too busy to do so much worrying.
Wishing you all the best
Lorrie

[nicoles mom]

Mibre
Double ditto with mary lou,nikki and lorrie this forum helped me alot. My nicole was 12 yrs old and was just fine before her surgery. I was so worried about everything. Once your on the other side you will fine so much stress will be gone. Do try to get some sleep. She will need you while at the hospital.
Keep us posted and Hang in there
In my prayers
Theresa

[KRIS ATKINSON]

I took my kids swimming the day before surgery, of course that was in July. If you have a YMCA or other indoor pool available, that is a nice way to exercise and have fun without the fear of injury and not much fear of illness. We also went to the movies the weekend before surgery. Out for dessert, fun stuff. I freaked out the whole time inside myself but the time passed easier by keeping busy having fun up to the last minute. I also had a good book going, which helped me get to sleep when I could do it. God be with you! Kris

[s&d]

We are 17 days into "the other side" and boy am I glad to be here!

You've already received some great advice and I'm not sure I have anything new to add. Keeping a routine helped, although it was hard to work very effectively that last week before surgery.

My posts here will show that coming to this forum was one of my coping mechanisms, and what a wonderful one. People here have been so supportive - there's nothing like the voice of experience. Even though I trust our doctor and all of the people at our hospital (Texas Scottish Rite) - it was so good to communicate with parents and patients who have "been there". I had a major meltdown just three days before we were to be admitted and the people here came to my aid with advice and support and much, much positive information. By the afternoon of the next day I was a new, stronger person and I know it was due to this resource.

I also compulsively made lists, checked them twice. I took care of as much as I could around the house knowing I wouldn't have time to do so when we returned from surgery. What was really great was that about two weeks before surgery my son's anxiety decreased dramatically and he relaxed and said he felt confidant that things would be okay. I have to attribute that change to many, many prayers said on his behalf by many people, because he is not by nature a child who would relax and say he was confidant! His positive attitude helped me so much.

My son is enjoying a very good recovery and I hope the same for your daughter. I will be thinking of you and will keep you in my prayers. And it can't be said too much, you have to take care of yourself, eat healthy food, rest (yeah, I know...)

Best wishes,
Sandy

[Marieokc]

Thanks for the info.

I'm so glad that someone asked the question about how to make it through the week before surgery and that so many people answered it! I was wondering the same thing.

Seems like the surgery is constantly on my mind and I'm having a hard time relaxing or enjoying anything. My daughter, Carrie, has said she can't wait to have the surgery over with so she can concentrate on getting well and being strong with a straight spine. I keep those words going through my mind constantly--I hear her voice and it calms me down. We still have a few weeks before surgery, and I'm sure I will continue to get worse as it gets closer.

Thanks to everyone for their suggestions and I plan to follow them. I have found this entire forum to be such a wonderful source of information and support; I don't know what I would have done if I hadn't found it. I truly appreciate everyone. Thank you so much.

Marie

[Laura P]

Marie,
We are almost 2 weeks post surgery. I ditto everything all have said. I was the same way as I had lost my mom Sept 9 and had gone through alot leading up to Jamie's surgery. This support group has been my life savior as has my friends family and prayers. We had Christmas to keep us busy but one thing we did that eveyone including her nurses and doctors enjoyed was made buttons. We used our button maker at church so I don't know if you have access to one. We took our daughters picture and put Jamie's Recoop Troop on the button with her picture. This gave me and her daddy a peace as anesthesia, and everyone that had something to do with caring for her had one and several people stopped me in the hospital and asked about it. It was Nikki I believe that said "it puts a face on the one they are operating on not just another surgery". I think you can buy a small kit at a Hobby Store too. This is just an idea and all of her friends and alot of her youth group got one. We did almost 100. Just kept us busy and we told everyone they were her prayer buttons to say a prayer for her each time they thought of it. We still wear ours as we are still recooping. Good luck and do rest because they let me stay with her in ICU and I fed her ice chips about every hour. I was tired but loved being at her side. Our thoughts and prayers are with you.

Laura
Jamie's mom fusion of T-2 to L1 12/16/05

[phaden]

My daughter is having surgery on January 4th. I am so worried and scared for her.

The week before surgery is absolutely the worst part of the whole experience. I was a basket case. The day before Caitin's surgery I had gone out to run some last minute errands and I suddenly realised I was driving around with absolutely no idea where I was or where I was going. The brain had gone into complete anxiety shutdown. Once the surgery is over and you actually have something useful to do (waiting on your child hand and foot), it's so much easier.

Not much you can really do to prevent the worrying, so we tried for blatant distraction -- we watched funny movies, read Dave Barry, etc. We didn't let Caitlin go out the week before her date (Fear Of Germs), so we removed all time restrictions on computer games for her. Whatever it takes to get through those days; they simply have to be endured.

Best of luck. Soon you'll have a taller daugter.

Cheers - Patricia

[AnnLF]

Mibre....we're thinking of you and praying for a safe surgery. I think you can tell by reading all the posts before this one, that you're at the worst place right now. That week before is an absolute killer....you can't eat, sleep or concentrate on anything. So, take comfort in the fact that soon, you'll be on the downhill side of this. I really don't think it gets much worse than that pre-surgical anticipation.

Smart move not letting your daughter see how worried you are. I think I read somewhere in this forum to hold it together until after they wheeled my daughter away and I followed that sage advice.

Like everyone says, try to stay busy. If I were you, I'd see a movie a day until the 4th. In a dark movie theater, there is some escapism. I found it to be about the only place where I could somewhat divert my attention from the looming surgical date.

Prayers to you and your daughter. Ann (my daughter was fused from T2 to L4 on 11/30/05)

[flowerpower]

Mibre, my son just had surgery 12/19, so the last 2 weeks prior to surgery are still very fresh in my mind. I was pretty hysterical the 2nd weekend before surgery and then I prayed and turned it all over to God and finally felt at peace that He would watch over my son. I'll share something else which was another reason for my hysteria: in the late 60's I had a younger brother (he was 3, I was 4) who was treated at Children's Hosp., Los Angeles for a tumor in stomach. I recall him spending Christmas also in the hospital so this was an especially emotional time for me. His condition was terminal, so this added to my anxiety until I looked hard at the situation and really put it in perspective.

While the scoliosis surgery is indeed a major surgery, at least the condition itself is not terminal. I also tried to keep in mind that stats show the risk of complications is less than 1%. This was the "mantra" I kept repeating to myself. I actually felt at somewhat at peace the week before surgery. Even while in the waiting room, I was able to hold together while my hubby kept breaking down. It wasn't until after the doctor called us in to tell us surgery was over and successful and I walked back out to the hallway that I cried, but in sheer relief that it was finally over.

Hope I didn't overstep boundaries by getting personal, I just felt it was important to share that perspective. Even while in the hospital I would look at some of the kids there (like the 6-mo. old beautiful baby girl with a horseshoe shaped scar on her head from brain surgery) and I would feel grateful that scoli surgery was "all" my son had to deal with.

I wish you all the best as you go through your childs surgery, the waiting is truly the hardest part. Please keep us posted on how everything goes.!

Take Care,
Renee

[mibre]

Thank you everyone for your kind, compassionate and thoughtful replies. Many of them brought tears to my eyes. I will definitely do some of your suggestions. My daughter had her final pre-op testing done today. We discovered this past week she has asthma when she did the PFT. She has had no symptoms. She seems to be holding it together. I'm planning on sending her to school on Monday and Tues. so she doesn't sit home and worry. We have to be at Shriners at 6am on Wednesday. Thanks again for being here with all your wonderful advice. I can't wait for this time next week or better yet in 3 weeks!

[dancermom]

Hi Mibre. I think this forum helped me the most as we approached my daughter's surgery date this last Nov. 28th. It just helped to talk to people who knew what I was feeling and going through. I also know that I was very worried about Elizabeth getting sick and the date having to be postponed - it was something more easily worried about than what she would be going through during surgery. Just a few more days and you and your daughter will be "on the other side". It is a much better place to be because then you put all your energy into her healing process and the recovery. The "what ifs" are replaced with dealing with the immediate needs of your daughter.

Please know that I will be praying for a safe and successful surgery for your daughter and peace for your heart. You have a lot of support here and please know you can write at any time and caring people will respond.

Connie

[nikyergen]

My biggest sense of relief was when my husband and I were allowed in the recovery room to see our daughter. I immediately cried because I had my baby (17 years old no less) back. Here is a terminology you will get used to also. We all talk about being on the "otherside." Well, the other one is your childs "NEW BACK." We noticed Crystal's new back immediately. I never realized how well endowed she was until her back was corrected. Oh my, oh my, what a surprise to me. You will be surprised at what you notice about your child. Do be prepared for your child to have tubes and such. And, because they lay them on their stomach for surgery, your childs face will be very puffy. Don't be alarmed. It is all very normal. We were lucky the only thing Crystal had when we saw her in recovery was her IV and her oxygene tubes. But, those aren't unfamiliar sights for us to see with her, as she has had her share of medical problems over the years. My biggest worry was triggering her asthma. The anethesiologist (sp) did absolutely wonderful with that. He was as concerned as I was, so he took every extra precaution there was. To comfort you a little, we went to Shriners too. We went to the Portland Shriner Hospital. You will be amazed at the care your daughter will get after sugery. Their number one concern with any of the kids is pain management. One nurse told me "We have enough drugs here, not one child should be in pain." You will like the fact of seeing children that are starting to feel better and allowed to be children. There was a wheelchair race down the hall one day while we were there. It made me feel so good to be in a hospital that they biggest concern was the children. The nurses really interact with the kids and try everything they can to get them feeling better. Sometimes it is just taking that 5-10 minutes and asking them what they are watching on tv or listening to on their headsets.

Here are a couple of things I recommend for the hospital.
1. CD Player
2. Body Pillow (you can get them at Walmart, Walgreens, Rite Aide, Fred
Meyers, etc.) I wish we would of had two of them in the hospital. The
nurses will like the body pillow too. It makes life for them so much
easier when they have to prop your daughter on her side.
3. Don't take homework, your child will definitely not feel like school work.
4. Don't take a lot of clothes for your child. We took mostly pajama
bottoms and button up pajama tops. Then we took clean clothes for
her to come home from the hospital in.
5. Be sure to have extra pillows in the car for the return trip home.
6. Take a couple of good books for yourself.
7. Personal Hygience products, bring her favorite products. Including Kotex,
not tampons, if she is that age.
8. You personal affects that you will need.

This list will go on and on. Others can add what they need.

Also, Shriners has computer access, so if you feel you need to sneak away, those four walls get pretty boring after a few days, feel free to ask were the computer is.

Nikki