Getting Ready for Surgery

[nikyergen]

Mary Lou,

Crystal is so excited about her surgery. After being so disappointed about her cancellation and then getting her date back. We discovered that I have a friend, 30 miles from us, that has a daughter that had scoli surgery last September. We didn't even realize she had a problem. Anyhow, it has given Crystal someone she personally knows to talk to and share her feelings with.

I, on the other hand, am uptight and nervous. Of course, this is my child and I think that is pretty normal. My husband doesn't say much right now. I know when his dad had to have a major surgery he was pretty quiet about it. I didn't realize how uptight he was until the day of surgery. Here we sat in the waiting room, I was pregnant with our last child and two toddlers. What a challenge. I am hoping he does okay this time, as it is his daughter and he gets upset when they are hurt and have to go to the emergency room.

In addition to getting Crystal's March 15 date back, we are in the process of moving into our new house this week and next week. So, by the time we get everything into the new house, we will only have two weeks until surgery. I won't even have the boxes unpacked by the time we have to leave.

She is admitted at 1pm on the 14th and has surgery the 15th. We probably won't leave until about 5am on the 14th beings we have cows that have to be fed and are calving also.

I am actually feeling better as far as my other problems are going. I think what the Naturalpath gave me to use has helped a lot. I am feeling like I want to do things again. I want to be part of life again, instead of holing up in my house. My friends have even said and act and look like I am feeling better.

We will keep you posted as the next few weeks go by. Crystal came home from school yesterday and home today with a cold. So are trying to get it taken care of. If she isn't better by Monday, I'll take her into the doctor. Not sure what they will do for a cold. She already take echinecia (SPELLING). I am going to put her on vitamin c today.

'til later,
Nikki

[Mary Lou]

Nikki,

Sounds like there has been a lot of changes in your house. Sounds like you guys have gotten a grip on "things". I'm glad. As for moving into the new house, you sure won't have time to worry so much about surgery, because you will be so busy unpacking!

The vitamin c isn't a bad idea. Jamie's doctor actually had me start her on vitamin c as soon as she came home from the hospital. Under the circumstances, your doctor might give Crystal an antibiotic. I wasn't feeling too well a week or so before Jamie's surgery and normally I wouldn't have gone to the doctor, but I didn't want to run the risk of having to stay away from Jamie, etc. and the doctor agreed to be safe than sorry.

As for your husband, try not to worry about him too much. My husband actually didn't even come to the hospital the day of surgery for a number of reasons. 1) made our other daughter more comfortable to have dad put her on the bus and reassure her that everything would be fine; 2) he does TERRIBLE in hospital settings; 3) he works for UPS and it is almost impossible to get off work in December; 4) my mom was with me the whole time. Don't get me wrong, my husband said he would get off work no matter what it took if I wanted him to do so. He would have driven me CRAZY waiting all day. Like I said, my mom waited with me the whold time and my sister-in-law stopped. My husband also called me hourly and was willing to come at any second if he thought I needed him.

Is Crystal donating her own blood? If so, you might want to call ahead of time to make sure she can still donate if she has a cold.

Take care and send me an e-mail if you need to talk or have any questions.

Mary Lou

[nikyergen]

Mary Lou,
Things are so busy here, sometimes I don't know where to start. I almost forgot to feed the cows today because I had so many things on my mind. Now, how can you forget to feed the cows when you have to feed two ton of hay a day. I finally gave the keys to the pickup to my 14 year old and asked her to please get started on it for me. She was a jewel and got it completely done for me.

I was really hoping with basketball season being over last Saturday that things would slow down for a while and we could get moved and settled in our new house. Oh well, I guess that is what I get for hoping.

My husband was talking about not even being there for Crystal's surgery, simply because we have to hire someone to come in a take care of the cows. I told him we would just set out 8-10 big bales on Sunday night and they would survive until he got home on Wednesday.

My concern about him not being there, is that Crystal really wants him there. She draws a lot of strength from her dad when she is scared. He has always been the one to calm her when she has a severe asthma attach.

As far as donating blood, the hospital wasn't too concerned about it. But, they said they would send me a packet in the mail. Still waiting for it. They apparently recycle her blood in surgery now and said they usually throw away the donated blood. So, they weren't really concerned about it.

Crystal is feeling much better today. Craig is supposed to bring home some sudafed from town for her. I asked the nurse about these things. She told me that as long as she was off all pain relief, etc., by the two week mark, she could take them. She takes Aleve for the pain in her back. The nurse told me to finish her ten days with it and then no more until after surgery. I almost want to keep her home from school until after surgery, but she would drive me nuts. She is to busy and to social to be home that long. I think part of her not feeling so good yesterday, is that she set into panic mode with the thought that if she doesn't kick this cold, it will be fall before she can have surgery.


Well, my little one wants the computer so I better sign off for now.

'til later,
Nikki

[susannajon]

Hi Nikki,

Our daughter is having surgery March 9th in NYC with Dr. Boachie. My whole family sends our well wishes and prayers to your daughter and family. Let us know how she does, and maybe our daughters can chat on spinekids.com!

Hugs and kisses to you!

Susanna

[susannajon]

Hi Mary Lou,

My mom is a nurse, and she actually suggested we talk to the doctor about adding vitamin C to her IV, as she feels very strongly it expedites healing. Have you heard or read anything about this? I think I'll post a general message as well.

Thanks, Susanna

[nikyergen]

Susanna,
Thank you for your thoughts and prayers. Crystal is fighting a cold right now. I am taking her to the doctor tomorrow. So, she needs a prayer for a recovery from this cold so her surgery doesn't get cancelled, as well.

She has wanted her back fixed for years, and to be this close and have a cold has got her worried. If she doesn't kick this cold, then it will be Oct., Nov., Dec., before she can get it fixed.

She is excited about her surgery and scared at the same time. She says she isn't scared, but when we talk, she cries. Her dad is real quiet with her about it right now. She asked him tonight, while he was helping her take her bed apart, if he was scared about her surgery. She told me that she knew he was because of the way he became silent and changed the subject. I know he is uptight about it, and has every right to be. She is his little (although a teenager) girl. I try to be strong and supportive to both of them.

I did call the superintendent of her school, as so many of the kids are sick at school right now. He told me that she needs to kick the cold and not come back to school until after surgery. This is simply because so many kids and teachers at school are sick. She picks her school work up once a week and goes in to have an appointment with him on Mondays to keep her exposure down from all of the bugs going around. It was so nice to have a superintendent that was concerned about this.

Anyhow, kind of stressful with this cold and then we are also moving into our new house at this moment. Should be completely moved by Saturday evening. Getting that done will help relieve the stress level for the entire family.

Well, it's late here and I am having trouble sleeping tonight. So off to bed again to try and sleep. Glad I have all of you to write to in the middle of the night when I can't sleep because my mind won't shut off.

'til later,
Nikki

[susannajon]

Nikki,

I'm so glad I'm not alone with this! I have not been able to sleep all week. The ER's around here are filled with people with the flu, and since none of us could get a flu shot because of the vacine shortage, I am so worried. My husband was sick all last week, and I feel like I'm fighting something, but I've been doing zinc and echinacea and vitamin C and hoping to stave it off. I might talk to her school as well and see what they think about keeping her home.

Today we're having a snow storm, so one less day when she might be exposed to something. She's driving me nuts because she's bored. It's going to be fun when she's home for 4 weeks!

Susanna

[Mary Lou]

Susanna and Nikki,

I hope everyone in your families are healthy soon and stay healthy! I think I told you this before, so forgive me if I did, but Jamie was told to start Vitamin C upon discharge from the hospital, but I've never heard of it being put into the I.V. Have you thought about starting it now? I've found there are advantages to having surgery in the winter, but dealing with sick people is not one of them!

What Crystal is feeling right now sounds just right. She is probably so happy at the thought of all of this being behind her soon, but on the other hand, it is a major surgery and that is very scary! Try your best to stay calm around her because trust me, if you are freaked out, they will be freaked out! I hope you guys have been able to settle in to your new home and that at least that will be one less thing to stress about.

Try not to be too hard on your husband. Is there another person that you daughter feels comfortable with who could go to the hospital with you? I know my husband would not have done well waiting all day, in fact, he almost passed out when he saw Jamie for the first time and I know that would have been worse had he been sitting in the hospital all day instead of working. Talk to him, I'm sure he is as scared as the rest of you are.

I don't know if any of this helps, but please know that you are not alone in this. In a few short weeks you will both look back at some of these posts and think to yourselves, what was I so worried about?

Mary Lou

[nikyergen]

Mary Lou & Heather,
Took Crystal to the doctor this morning. She is at the tail end of her cold, but has gotten a sinus infection. So she is on antibiotics for 10 days and cough syrup as needed. Doctor reassured me she would be healthy enough for surgery on the 15th.

Actually for my husband. He is starting to come around for her. He will be there for her at the hospital. He would be disappointed in himself if he wasn't. Once Crystal is out of surgery, he'll be fine.

We found out today, and Crystal doesn't know this yet, that she is being installed at the Grand Page for our Grand Officers for Rainbow for Girls in the State of Oregon. She is the Worthy Advisor for our Rainbow for Girls here in Union County. The reason we found out is because she was supposed to go to the State Initiation on March 5th. Craig & I had decided that she probably shouldn't go and take a risk of getting run down and sick 10 days before surgery. It will be a huge slumber party the night before. Now we don't know what to do, because it will be announced on the 5th and the girls are supposed to be fitted for new formals. Yeah, my little wrangler jean wearin' girl wears formals twice a month. She doesn't even know about being installed as Grand Page this coming June. The Mother Advisor called Craig today and asked why we weren't letting her go and then told us the problem. I guess they are going to talk to the Supreme Deputy and try to figure out the dress fitting.

I sure hope Crystal doesn't plan on having a boyfriend for the next two years. She installs her middle sister as Worthy Advisor of our assembly next January. She gets installed as Grand Page this June, which means six months of doing a dual office. Then Spring 2006 she is crowned as the East Queen for the East-West Shrine Games in Baker City. All of this plus basketball, volleyball, FFA, and her responsibilities at home, her animals, and most of all her surgery in a couple of weeks.

Well, I need to get to moving some boxes.

'til later,
Nikki

[susannajon]

Nikki,

Glad to hear Crystal is on the mend. Stay well and try to get some sleep tonight!

Susanna

[jc3]

i was reading this post on everybody being worried about colds before the surgery. I was freaked out by it before my daughters surgery. Being a bit of a germaphobic to begin with i was so nervous before my daughter's surgery that she would get sick. Needless to say 2 days before her surgery my other 2 got strep throat. Thankfully nicole did not get it. But i was also annoyed while we were in icu, the nurse that was taking care of nicole had a bit of the sniffles, which i noticed and one of the night nurses as well had a cold. I was not happy about that and i was going to complain, but kept my mouth shut. I was just so scared that nicole would catch it. Again, she didn't. I tried beforehand to tell myself that if godforbid she did get a cold and the surgery had to be canceled then it wasn't meant to be at that time.
good luck to everyone with their upcoming surgeries and stay healthy.
jennifer

[nikyergen]

Jennifer,
It is nice to know that I am not the only one that worries about colds and surgeries. The biggest issue we have with Crystal is that she has severe asthma. We work hard at keeping it under control and do a very good job at it. She has a slightly weakened immune system because of her asthma and seems to catch anything that goes around and it takes her twice/three times as long to get rid of it. She was in the hospital for a week the end of November with pneumonia, which just attacked her on Thanksgiving day.

The other problem is that Crystal has constant back pain, and has dealt with back pain since she was 5 years old, and really needs this surgery. If it doesn't happen on the 15th of March she will have to wait anywhere from 6 months to 1 year to be rescheduled because her surgeon is so busy.

When I took her to the doctor today there were three other school mates in the doctor's office too. I told the doctor she needed to do a special for our school today because of that. Every student at school seems to have this crud going around and they are anxiously awaiting spring break to break the cycle of it. So, we really don't want to keep exposing her and reinfecting her. Her doctor even agreed with the superintendent about keeping her home until surgery.

So, what do we do. We pray about it that she is healthy the day she goes in for surgery.

By the way, I understand the staff being sick thing. When we were at the doctors office, almost every staff member was coughing and hacking. When Crystal had to cough, she coughed into her shirt to keep her germs to herself. Her doctor thanked her for containing her germs and wished the staff and patients would do the same. I guess it is a habit she got from me. I guess I just figured no one else wanted my germs, so I'd keep them to myself.

Anyway, I hope she is on the road to recovery.

'til later,
Nikki

[jc3]

hi nikki
hope your daughter is doing better. I'm missed in the posts when is her surgery
jennifer

[nikyergen]

Jennifer,
Crystal is scheduled for surgery March 15, 2005. She is admitted to the hospital on March 14, 2005. So, we are anxiously on countdown and trying to get moved into our new home at the same time. Ugh. Way to much to be done.
Nikki

[Mary Lou]

I worried about Jamie staying healthy before her surgery as well. In fact, I ended up on an antibiotic about one week before her surgery and was really freaking out because I didn't want her to get sick and also I didn't want to be banned from staying in the hospital. It all worked out, thankfully.

I sometimes wonder about hosptials. Here Jamie was not even 24 hours after she left the o.r. and they put a young lady in her room with her that had a severe infection! I know they said they didn't have any other rooms, but wouldn't you think maybe they could make better arrangements? Thankfully the girl's Mom was very good about everything. She kept after the hospital staff to make sure the bathroom was kept clean, they washed their hands a lot (as did we, of course) and all went well. That was a big part of why we were so happy to get out of the hospital.

Make sure you wash your hands often in the hospital, after all, there are a lot of sick people there!

Mary Lou

[susannajon]

Mary Lou,

I would have lost my mind! That must have been awfully stressful for you. My mom is a nurse, and she's scared me to death about infection risks in the hospital and the nasty germs that float around. That is one of the main reasons we decided on Hospital for Special Surgery, not only are they one of the highest ranked hospitals in the country for orthopedics, but they also have the lowest infection rate, probably because it is an othopedic hospital only, most surgeries performed are on otherwise healthy people. My heart goes out to you! I am so glad it all worked out.

Susanna

[Mary Lou]

Hi Susanna,

How's everything going? I was starting to panic when I couldn't post anything on this site for a few days. All I kept thinking was, your daughter's surgery is right around the corner and I wouldn't be able to wish you good luck.

Mary Lou

[jc3]

hi marylou
i don't know if you saw that i wrote to you asking what happened with the car accident. I hope everything is okay. I felt bad that i couldn't send a message to you about it right away because the board wasn't working. It seems like it is working now.
write me when you get a chance
jennifer

[nikyergen]

Susanna,
I hope all is well with your daughters surgery next week. Crystal is about to drive me nuts. I took her to school for a little while this afternoon. She is over her sinus infection and got a clean bill of health from the doctor earlier this week. We are moved into our new house, but had to wait a week for the new phone to be hooked up. It was finally hooked up late this afternoon. By then I had cows to feed and Crystal wanted to talk to her teachers about some assignments.

My mom is a nurse too. However, the one time in my life I could use her suggestions, she is about useless to me. But, she is taking our youngest daughter for the week while we are at Shriner's Hospital.

Anyways, I'm back on line again and can respond now. I have a ton of transcription work to do for a business in town that I work for. I need to get as much done as possible before Crystal's surgery so I have money to spend in the big city of Portland. :rolleyes:

'til later,
Nikki

[susannajon]

Kay, wow, I am so glad your daughter is OK after her accident. Sometimes it takes a fender bender to remind kids that they are not immortal, and that hurtling down the road with nothing but few mm of sheet metal protecting you is a thing that must be taken seriously!

Nikki, Mary Lou, Jennifer, Thanks to all of you for your kind thoughts. I was really bummimg too thinking this was a terrible time for the site to be down! As sugery approaches, no one in our house can sleep. Last night, 4 in the morning and we're all awake! I was tossing and turning all night, and finally got up to take a couple Benadryl to try and sleep. I saw my daughter's light on. She was up, drawing in her sketch book. A few minutes later, my husband was up, watching TV and eating cereal.

I am at peace with our decision to have surgery... what's eating me up is worrying about my daughter being in pain. She's never experienced any real physical pain before. Her worst experience was a couple of stiches when she was 3 or 4. When the doctors we've seen asked her to describe he pain levels now (pre-surgery) she describes them as a 7 or 8. I keep thinking, "Little girl, you have no idea what you're in for."

Anyhow, it is heartening to read your posts about your teenagers, doing normal teen stuff, even if it is wrecking the car!

Kay and Jennifer, I have read so many posts from people who's kids have shoulder blade pain after surgery, as the muscles and tendons get used to their new positions, and that it takes up to a year to work itself out. If that's the worst they are feeling, I think your girls are both going to be fine.

Wish me luck sleeping tonight! It's 1:20, and no luck yet...

Susanna

[nikyergen]

Susanna,
Boy, do I know the "I can't sleep" mode. I am in it now. I spend a lot of time wondering around my new house trying to decided what I want to do with it the next day when everyone else is awake. I keep hoping I will get tired enough that I will just go to sleep about 8pm and sleep until 6:30am the next day.

I thought the same thing about Crystal's pain level when she told the doctor how much pain she had. "Do you really know how much pain you are going to be in?" However, a personal friend of ours had a daughter have this same surgery last fall. The daughter told her that it was well worth it, because she does feel better now.

My prayers are with you and your family as you prepare for your surgical journey. We are following in your footsteps, six days later. You'll be about to head home, by the time we get started on surgery.

Well, I am going to see what I can get done in the house, quietly since everyone else is sleeping now.

Pray for sleep for all of us.

'til later,
Nikki

[jc3]

hi susanna
I practically cried reading your post worrying about your daughter's pain she is going to endure. It just brings back so many memories for me. My daughter never experienced real pain before this either and is the biggest baby so i would practically cry before the surgery thinking of what she would have to be going through. Remember she wouldn't even donate the blood, but they will manage her pain well and i have to say that with the pain and recovery my daughter does not have a bad thought about the whole surgery and recovery. She doesn't think back of it as a bad thing, she said she wishes she was still recovering from it, she loved being home, catered to and she said she misses being home all day not going to school and watching t.v. So they kind of forget i think after and i'm glad she at least remembers it not as a bad thing to go through.
Jennifer
Nikki,
At least you have the whole moving into a new house to keep your mind off things a little. It's good to be busy before this. I saw that you said you do transcription work, so do i from home. What do you do?

[scoliosis-mom]

Susanna,

You sound just like me before my daughter's spinal fusion in 2003.

My daughter was so brave and seemingly unconcerned about the reality of the operation that she walked to the O.R. with no sedative. I was also standing there thinking "she has no idea"...

12 hours later, it was a different story.

Just a note about pain management in the PICU. Some kids (my daughter included) don't find significant relief from the morphine drip. After 3 days of feeling pretty terrible, the PICU staff switched her to Percoset and she actually did much better and responded more swiftly. The head of the PICU told me they occasionally have kids who don't get the relief they need from morphine.

But, today, she really has no significant memory of the first week and also tells me she wish she could have another 2 months off at home :) She just mentions that the doctors didn't really tell her what the first week would be like, but she's okay with it.

You guys will get it through it just fine!

Susan

[nikyergen]

Jennifer,
I do transcription work for the Oregon Historical Society, Union County History. I am also working on finishing my Medical Transcriptionist training, so I'll have that too. I really enjoy the Historical Society transcription. It is interviews with people that have been here in the area for years, and were farmers and ranchers when they came here. It's interesting to listen to. Sometimes, I know the people, or the people they are talking about. It gives me new insights on our Union County History. I was a transcriptionist for years, before computers, and really enjoy doing it.

I am glad I do this kind of work, as it will allow me to be home and work and take care of Crystal. I, also, homeschool my youngest daughter. Crystal is glad right now that I don't have a job in town. When I did work in town, it really upset her. I was at home being a mom for 11 years and then went to work. She didn't like the fact that she couldn't just call me during the day to say hello. So, I decided it was time to put my computer to work for me, and this allows me some deductions on my taxes too.

Well, I need to get back to my headphones and getting to burning up my keyboard. I type 120 wpm. So, doesn't take me long to get one interview done.

I'll check in later.

'til later,
Nikki

[susannajon]

:) Thanks to all of you for your kind thoughts. I had major surgery a couple of years ago, and so did my dad and sister , and none of us got adequate pain relief from Morphine. It didn't do a darn thing for us. I talked to the pain management person at the hospital and they decided they would start our daughter on Delaudid instead of Morphine, so hopefully she won't have those first two terrible days that my family experienced. This hospital seems awesome when it comes to pain relief. They are known for their pain management department. Thanks especially to Jennifer, for sharing your insight. It helps to know our hospital took care of your Nicole when it was her time.

Susanna

[jc3]

hi susanna
Delaudid is what nicole was on instead of morphine. She did fine with it. At one point they had to up it a bit, but she stayed on that for like 5 or 6 days, which actually was longer then they wanted her on it.

[mamakay]

susannaj,
Thanks for the input on the shoulder pain.
That seems to bother her everyday and I am not sure how long it will take to be over.
Yes you must look at your baby and think thank goodness she doesn;t realize what pain is ahead,
Does she have pain now? Some kids on here have actually come from surgery w/out much lasting pain. My Dr said patients need the pills from 2weeks to 6 weeks.
Maybe your dtr will get lucky and be the 2 week type.
Does she have pain now? Ste was taking motrin everyday before the surgery.
What is her curve?
Good luck and a prayer...kay

[susannajon]

Hi Kay,

Thanks for your prayers. The support of all the mom's out there in cyberspace has been wonderful.

My daughter does take a lot of Motrin too. Her back aches, especially when she gets her period, and she gets muscle spasms. I haven't been letting her take Motrin, so she's been making due with Tylenol these past couple of weeks. I'm just being cautious about bleeding (probably over-cautious).

My daughter's curve is 43 degrees thoracic from T3 to T9, and 60 degrees thoracolumbar from T9 to L4. The thoracolumbar curve is structural, and the thoacic is compensatory, so the doctor is only going to fuse the structural curve. His plan is to fuse her T11 to L2, using an anterior approach. He expects to be able to get her curve down to the low teens. She's got a bit of a rib hump, but he'll be using her ribs for the fusion, so that should be fixed as well.

Yesterday, we finished most of the last minute stuff, like picking up a potty seat with arms and getting a shower chair and some extra body pillows and such. Today, we're doing the last of the laundry and packing the car. Tomorrow, it's off to New York!

Susanna

[jc3]

susanna
just wanted to write a last minute GOOD LUCK! All of us here will be thinking about you all day on wednesday. How long did he say the operation should take? This whole thing will be over before you know it. Thursday after our appointment if it's not too late we will try and run over for a visit. Where will you guys stay the night before the surgery? Do you have to stay in a hotel or is she allowed to stay at the hospital?
Write back before you leave for ny if you get a chance
Jennifer

[jc3]

hi nikki
i didn't even know that you replied back to me about the transcription work. I also do transcription work and as you said the best part is being able to be home. Sometimes it's alittle hard though to do my work with the phone ringing, cleaning up the house, and running out to the stores, etc... But i love that if there's something going on at school with the kids i can be there. What you do sounds interesting. I type up court hearings.
Anyway, how is everyones stress level at your house?? Hope all is well
Jennifer

[nikyergen]

Jennifer,
The stress level here. Pretty stressful. It doesn't help that we moved last week. Still trying to find everything.

I am going to concentrate on my transcription today and tomorrow and hopefully get one more job done by Friday. It will help keep me pre-occupied.

Crystal is trying to get all of her school work done before we go. Since, next week is the end of the quarter and she has surgery next week, she'd like to have it done. THat way she won't have to make up any incompletes.

Crystal has been home the last couple of weeks because all the kids at school are so sick. She kept coming down with the creepin' crud. So, between the Superintendent and I, we decided that she should stay home and do her work here and go in to see her teachers once a week. This is working great, with the exception of her English Teacher. Crystal is completely over all of this garbage and ready for surgery. Wish they could do it tomorrow. Then it would be behind us. But, I guess next Tuesday will be here before we know it.

Susanna, good luck to you guys on your surgery. You will be in our prayers. Let us know how things go.

Well, better get. Have lots to do today. You know, laundry, unpacking boxes, finding things I can't live without, etc.

'til later,
Nikki

[susannajon]

Nikki, Thanks for your thoughts!

Jennifer, One of us will stay in the room, and one of us will sleep in the Belvedere guest facility attached to the hospital. We're planning on alternating so neither of us will get too wiped out. It would be great for my husband and I to see what it's like to be "on the other side". If you and Nicole stop by it would be great.

Susanna

[scoliosis-mom]

Susanna and Nikki,

Just one other small thought to send your way before the surgery.

(The point of this is amusing, actually). A lot of the kids will have swelling in their face and around their eyes the first few days post-op. Depending on the length of the surgery, fluid pools there while they are face down during the operation.

The lighthearted thing for us was that my daughter (who was 16 then) dyed her hair jet black and spiked it (the way kids do) and was mistaken to be Asian by just about everyone (except the nurses who knew better) the first few days.

Several other families actually asked me if she was adopted. Her own grandmother didn't recognize her when we were standing in the hallway and happened to catch a glimpse of her being wheeled right past us from the O.R. to recovery. I said "that's her!" and her grandmother said "no, I think that girl is Korean".

Anyway, the point is it's nothing to worry about and the swelling went down in a few days.

We'll be thinking about you guys!

Let us know how it goes - we'll be waiting to hear how nice and straight the girls are!

Susan

[susannajon]

susan,

thanks for the warning. i'll try not to freak out when i see her little puffy face.

xoxo

susanna

[jc3]

susanna
i don't even know if you'll get this before you leave. I have butterflies in my stomach for you. Great idea about taking turns, it will give each of you a break! Good luck, again we all will be praying and thinking of you guys on wed.
jennifer

[jc3]

nikki
that was a good idea to keep her home for a while, too many germs going around in the winter. I'm glad she's all better. You sound very busy, but it's good at least with everything else going on (the move, work, etc) it takes your mind off things a bit.

good luck and stay in touch
jennifer

[susannajon]

Thanks Jennifer! I'll try to e-mail everyone when we get out of surgery. Susanna

[nikyergen]

Jennifer, Susanna, Susan:
Crystal is starting to get nervous. Could be a long week for her. I almost had her on the boards yesterday. Got her registered, she sat down to start reading, and then she got up to do something else and never went back to it.

Crystal wants to spend time with her boyfriend and friends this week. But, I don't know how much I can let her out, with the risk of getting sick again. I told her they could come here, but if any of them was sick they had to go home. She's pretty bummed about that. I am doing the right thing? I don't know.

She didn't sleep well last night. She was just wandering all over the house during the evening. Tried to get her to pick up a book and read to relax. She does for a little bit and then gets up and paces again. She says it is excitement that this will soon be behind her, but I think it is nerves. I am going to try to get her in the shop with me today to find some boxes.

Susan, thanks for the warning on the swelling. It may be a shock to us. And, it is nice to know these things to be prepared for them.

My husband and I are doing the same thing as Susanna and her husband. However, my husband will have to come home for a few days shortly after surgery. We have a ranch and the cows are calving. He'll be at the hospital for a couple of days, home a couple of days, and then back at the hospital until we are ready to go home. Unfortunately, this is the way it has to be since we are 260 miles from home to the hospital.

Susanna, you guys are in my prayers. You should be coming home about the time we go in. Keep in touch.

'til later,
Nikki

[jc3]

hi nikki
i understand you being worried about her getting sick. I also worried alot after when we got home with her friends coming over. I was scared that someone would get her sick while she was recovering, she didn't need to get sick on top of what she had just been through and i worried about if she got a cough, how much it would hurt to cough after. I kept saying if your friends want to come over just make sure no one is sick. I was like a freak about it for a while. It's hard before the surgery to keep them in because they want to be with their friends before. The day before nicoles surgery she wanted to go into the city with her friends and i wouldn't let her, i just didn't want her near all the crowds etc.. she was REALLY mad, but she got over it. It's not easy, but it will be over before you know it.

Jennifer

[nikyergen]

Jennifer,
I am glad I am not the only one that has put my foot down about the sick friends being around. Crystal wants to go see her boyfriends grandma Saturday night and watch movies with her. Yes, my 16 year old does this. I told her she probably could, but that she had to be home early since we were leaving for Portland the next day. She got kind of groucy with me, so I think dad is going to handle for me beause he feels the same way.

I am kind of getting ready to go. I have to remember all of Crystals asthma meds, because she will need them in the hospital. Some of them are oral, so I am not sure how they are going to give them to her the day of surgery. If she doesn't have them, she could have an asthma attack. She also takes an inhaled steroid, so hopefully they will let her take it before her surgery in the morning.

Anything special we need to take. She is taking her CD player, which means I need to buy batteries.

I think Susanna's daughter has surgery today. Need to keep her in our prayers.

Well, I need to get. Have some transcription to do. You know how that one goes.

'til later,
Nikki

[Mary Lou]

Nikki,

Yes, Susanna's daughter is having surgery today. Waiting to hear from them just like we will be waiting to hear from you next week.

As for what to pack, I'd say pack lite. We took a few magazines and her CD player and Jamie never touched them. We took her eyeglasses instead of her contacts and she didn't even ask for them until she was out of bed and sitting in a chair. I took magazines for myself, but didn't really have time to read them. When she rested during the day, I took advantage of that time to go for short walks just to get out of the hospital room. Make sure you take slippers with non-slip soles because they will want her up and moving within a few days of surgery. We found that it was easier to come home in slippers instead of worrying about sneakers.

Remember to ask the nurses to wash her hair before she comes home. She won't be able to shower until probably 10 days post-op. Jamie preferred me to bathe her in the hospital, but I asked the nurses several times to wash her hair and they never did so when the doctor asked if their was anything we needed, I told him. It was funny, how the nurses could suddenly find time to wash her hair once the doctor wrote an order for it! I think the most important thing to remember to do is keep track of her pain meds once she is off the morphine pump. Don't hestitiat to ask for the meds, but don't be surprised if they make Crystal ask for them instead of you, but encourage her to ask for them. Also, time your departure from the hospital around her pain meds.

Our thoughts and prayers will be with your family on Tuesday. Keep us posted when you can.

Mary Lou

[jc3]

hi nikki
i think marylou pretty much told you everything you need for the hospital. Like she said we had tons of magazines from people, not one did nicole look at. She didn't even use her cd headset, nothing. One day when she was in alot of pain i did show her a magazine to try and get her mind off the pain, but she wasn't interested at all. So basically you need nothing LOL. The things i found that we used were chapped stick, lotion, i forgot ponytail holders and i couldn't believe they didn't sell them at the store in the hosp, so those are good to bring and the button up pjs and slipper socks like marylou said. Nicole did watch t.v. when she was awake. I stopped working the week before the surgery because i just couldn't think about anything else and then i took some time off when she came home, which was good.
keep in touch
jennifer

[nicoles mom]

Hey Everyone
I;m So Glad I Started Reading This Post Lots Of Good Infor.We Are Going In 21 Days.nicole Went For Her Mri Today She Was Mad School Was Closed.{snow Day}. I Was Going To Pull Her Out For The Test.tomorrow We Go For Part Two Of The Mri.almost Done Just Have To Donate Blood And Go For A Breathing Test.she Going To Be Marching In The St. Patty Day Parade In The City Next Week.she Plays The Bells.so My Husband And I Are Going In To Watch. I Hope See Can Make It.I Pray The Weather Is Nice Or She Not Going I Don"t Want Her Sick.I Heard Its A Long Walk And Her Back Has Been Hurting Lately.I Was Thinking About What To Do With Nicoles Hair For The Surgery.Its Long One Length. Two Braids Or One???????.
Thanks Theresa

[SarahH]

I am like too March17th
Seattle

[nikyergen]

Theresa,
Crystal has long beautiful blonde hair. We have decided to put it in two french braids, then hopefully, it will be out of the doctors way. That was Crystal's decision. It will be one of the last girly things we do Monday night before she goes to sleep. Tell Nicole, that's my name too, that we will be praying for your family during this trying time.

SarahH,
Good luck to you on the 17th. We know how you feel, it still seems so far away. We will be praying for you.

Jennifer,
You have been so great. I am trying to finish up one interview tape by tomorrow, so I have extra money to go to Portland with. I think I'll get up about 5am and finish it. Anyhow, thanks for the great support you have been to us.

Mary Lou,
You have been the greatest since the first time I came on these boards. You made me feel very at home about my questions I had. I didn't feel silly when I would ask. Thank you so much.

To all of you,
We are keeping all of you in our prayers.

'til later,
Nikki

[Mary Lou]

Nikki,

Thanks for the compliment. As you've learned, none of us are here for the praise or thanks-we are all just in this together. I honestly don't know how I would have gotten through all of this without this forum. The people who started this forum and keep it running are the ones we really need to thank.

Here's a thought-have you considered buying Crystal some new body gels, lotions or bubble bath for Monday night? Since it will be awhile until she shaves her legs and even longer until she can soak in a bubble bath, why not pamper her a little? Maybe offer a back rub- it will not only help relax her so maybe she can sleep, but it will give you time to talk about last minute concerns.

Hang in there.

Mary Lou

[jc3]

hi guys
we just got home from nicoles 4 month post op, everything went well. We also walked across the street to see susanna and i am so upset she wasn't there. We met her husband, she was at the hotel getting some much needed sleep. Their daughter was sleeping as well and is doing good. We got to speak with her husband for a while and there was a girl in the next room that had the surgery the same day as susanna's daughter and we got to visit with her as well. She was awake and doing great. It was great speaking with them. I really was hoping to meet susanna.
He lifted some restrictions on nicole which was good and we have to go back again in 4 months.
jennifer

[Mary Lou]

Jennifer,

So what restrictions were lifted and what restrictions remain in place? No matter what restrictions were lifted, I'm sure Nicole wants more of them lifted. I'm so glad she is doing well.

Sounds like Grace and Susanna are doing okay as well. Do you remember being in her shoes four months ago? Jamie is three months post-op and the memories are as fresh as if it were yesterday but yet it seems so long ago. Thanks for checking in on them even though you missed Susanna.

Mary Lou

[nikyergen]

Jennifer,
It is good to hear that Nicole had a good 4 mo. post-op. The doctor will lift more restrictions as healing allows.

I am so sorry you didn't get to see Susanna. I am sure she could of really used a hug from you. But, it sure sounds like Grace has done well. Susanna said she was pretty miserable last night and didn't get much sleep. Hopefully, tonight will be better for them.

I got my very last transcription tape done. Now, that is out of my hair. I told them to drop my next round of tapes off at my husbands office on the 18th and that he would bring it home and leave it on my desk for me. Now, I can get into getting the house a little more settled during the next two days and get packed to go.

Craig told me he would help me get some picture hung and some of my other interior decorating things that I need help with. You should see our shop. It is wall to wall boxes. You can't get a rig in it to work on. Hopefully, tomorrow I can get it attacked tomorrow and make a little room for Craig's things, since the shop is his domain.

I let Crystal go to school for a few hours this afternoon, she had some tests to take. She has to go in the morning too, to finish some tests from a teacher that wasn't there today. It will be good for her to see her friends. She had her Winter Sports Award Dessert Banquet last night. We went and she had a great time. All the kids seem to be relatively healthy now. I told her not to hug any one that was even remotely sick.

I am starting to actually feel a little more at ease about things today. Maybe because we are finally getting so close. We are leaving in a couple of days, instead of three weeks. I sure wish we all lived closer, so we could all meet each other in person. But, we will have to be satisfied with this for now.

Crystal asked me what the date was today. You should of seen the look on her face when I told her it was the 10th. Her eyes popped and she said "No way." I said "Yes way." She seems to have settled a little bit today too.

Well, I need to get, it's time to feed the cows and then it will be time to feed the family.

'til later,
Nikki

[susannajon]

Hi everybody,

First, Jennifer, I am so dissapointed I missed you today. I was mad at my husband for not calling me, but he was afraid he'd wake me. I walked in 15 minutes after you left. Maybe we can meet another time. Let me know when you have your next follow up. Perhaps one of these days?

Nikki, tell Crystal that the braids are brilliant, but mom, you will need to re-braid the hair very couple of days to make sure she doesn't get a huge rats nest. My daughter's hair is almost to her waist. She wants to give her hair to "Locks of Love" this summer when she can meet the minimum donation length and still have long-ish hair after she cuts it. She wants to give something to kids with an illness that can't be treated as easily as scoliosis.

My daughter's hanging in there. She's feeling like she was hit by a train, and neither of us got a wink of sleep last night, but everybody's maintaining a positive attitude.

Later everyone!

[jc3]

hi marylou
sorry i was pretty vauge on the restrictions i was in a rush. Okay, he didn't say much but nicole asked about a few things and so did i. I told him that sometimes when she gets out of the car she runs to the house, is she allowed to run and he said yes. I also said that sometimes when she is leaving the house she will jump down like 2 steps and i yell at her everytime i asked if she should be doing this and he said no. She asked if she could go on her friends trampoline and he said not until 1 year. She asked if she could go swimming and jump in he said yes and we asked if she could jump off the side of the pool onto a raft (because we have a pool and that's what they like to do - not that she could do it now since it's freezing) but he said yes, she can now bend and she was thinking about doing badmiton and he said in 2 months she could do that. We did forget to ask about going on rides this spring and she forgot to ask if she could go bowling, but i don't want her to do that yet anyway and i've been driving her to school and he said she could go on the bus and since she doesn't like anyone touching her back, he gave her 6 weeks of p/t for them to desensitize her back, she wasn't happy about that. She doesn't want to go. He said to basically get back to normal, which is pretty much is, but take it easy. I took a picture of her x-rays with the digital camera. It is wild seeing those x-rays!
And yes i remember being in their shoes 4 months ago, it is going so fast. It felt good to be where we are now. Susanna's daughter was sleeping so i just got to peak in on her, she looked comfortable and the other girl next door was awake and i teared up when i walked in the room and started talking to her. Just brought back so many memories.
Jennifer

[jc3]

nikki,
it sounds like you guys are all set and the day is almost here. If there is a computer there try and e-mail us from there. I'm sure you can relax now also knowing all your work (typing) is done. I know sometimes i can't relax until it is done, just knowing it is in the house i feel like i have to do it. When it's all done, i feel so much better.

susanna,
I can't believe you came in 15 minutes later! Maybe we'll meet up one day on post op visits for the girls. Will you be going to him or someone by you for that? I am glad she is feeling better then last night. Have you seen boachie yet? Your husband said she hates those things on her feet, my nicole hated them too, she kept asking them to take them off. Keep us updated.
Jennifer

[nikyergen]

Jennifer,
Was the other girl you saw Chava, that posts on Spinekids? If it was, I saw your post this morning. Everyone will be thrilled to know how she is doing. Are you Jenn3 on that sight?

I got some sleep last night, it was interrupted sleep, I woke up once at 11pm to move from the couch to the bed and fell right to sleep, 4am again because I was cold and went back to sleep abouat 5am and got up at 6am. But, it was about 9 hours of sleep, instead of 3 or 4.

Crystal spent the night at a friend of ours last night. Hope she had a good time. The only reason I let her go on a school night, is that all the girls are going to be super busy this weekend and won't have time for a sleepover. They only have a half day of school of Friday's, so I figured that would be okay.

I can't believe it's only 3 days til admission, and 4 days til surgery. I am starting to feel at piece with this. Thank goodness.

Well, I need to get. I'll write more later.

'til later,
Nikki

[Mary Lou]

Jennifer,

Thanks for posting about the restrictions-you know Jamie is only a month behind and I'm always curious even though it seems their restrictions are so different. At her three month check-up we asked about swimming and she is allowed to do that, but we didn't ask about diving because I knew she wouldn't be allowed to do that but thought the swimming would be a good way to get some exercise. The trampoline-yikes!-I'd be afraid to let her do that before one year, but it is always nice when the doctor says no which means we don't have to be the mean one. I'm glad she is able to get back to normal for the most part. As for the p.t., is there a place you can take her for her therapy that has a pool? Jamie does about 30-40 minutes in the pool before doing her regular therapy which last about an hour to an hour and fifteen minutes. The last thing she does in the pool is sit in front of the water jets and lets them hit her back. I've noticed a big change in her since using the jets. In fact I saw her friend reach to pat her on the back the other day and I cringed. Jamie didn't even react at all!

I'm glad you took a picture of the x-ray. I need to ask Jamie if I can put her pictures on this forum. I have pictures from just before surgery, pictures of x-rays that were taken in the O.R., and every x-ray from the time of her diagnosis until her last follow-up appointment. The before and after pictures are amazing!

Mary Lou

[pat]

Hi ladies!
Catching up on all the posts! Funny, the differences in restrictions. Jamie was told two months ago that she could try diving (at 3 months post-op!), but she hasn't tried yet, which I'm grateful for! Swimming has been great for her too! She swims laps for 30 minutes or so, and then goes and soaks in the hot tub/therapy pool! Happy to hear all is well w/Nicole and Jamie!
p

[jc3]

hi nikki
wow 4 more days. I can't believe it. I bet you just want it over with already. Well, we'll all be here for all your questions when you get home. You know we'll all be thinking of you on that day and yes, that girl was chava. I couldn't believe it! She was doing amazing when i saw her. She was really alert and asking us some questions about her recovery and she told us that she hadn't even pressed the pain pump in an hour.

marylou,
i know all the drs are different with the restrictions. At least i feel like i could rest a little bit now knowing she can do a little more. I know about the trampoline, but her best friend has one and she loved going on it, i'm glad he said no though. And he said no tumblesaults on it. That is great that jamie does all that swimming. I don't think nicole would let the jets go on her back, she doesn't even like the shower water going on her back, that is why the dr wants the p/t to rub her back. Your daughter is definitely benefiting from that because the dr. said if you never touch it, it will never return to normal feeling.
pat
how are you guys doing?? You haven't been on here in a while

well have to go for now talk to you all soon
jennifer

[nicoles mom]

Well I Am In The Panic Stage Going For All The Tests . She Is Going For This Surgery. I Got To Take Home Her Mir Films {wow} Nicole Is Being A Little Bit Of A Brat . But My Husband And I Try To Keep Her Grounded. She Has Been Asking So Many ??? . Just Wants To Know About Doing Things With Friends And You Girls Know They Social Lives Are Better Then Ours.
Nikki 4 Days I Have 19 I Wish I Was In Your Shoes Can't Wait Till The Summer Then She"ll Be 4 Months Out Like Jennifer And Mary Lou Kids . Did I Tell You Guys Lately Your The Best. I Should Had Been On The Site Months Ago. I'm Starting To Feel A Little Less Stess. I WEnt For A Massage Today Boy Did That Feel Good :p . I Haven't Done That In Years Too Busy Taking Care Of Everyone Else. My Daughters Goes For A Massage Twice A Week And I Just Sit And Watch . So Today Debbie Gave Me One Too.
Niiki Good Luck In My Prayers.
Jennifer Glad Your Daughters Check Up Was Good.
Mary Lou Hi How Are You. I Wish I Knew How To Do A French Braid So We Are Going For The Regular Ones.
Susanna So Glad Your Daughter Is Feeling Better. Boachies Girls In The Office Have Been Great With All That Has To Be Done Before And All My Questions.when Do You Leave To Go Home.
Well Nicole Needs The Compter Talk To All Soon.
Theresa

[jc3]

hi theresa
19 days will be here before you know it. Is boachie doing your daughter too??
I'm sure you daughter is feeling the stress too. You wouldn't have wanted to live in our house before my daughters surgery. She didn't want to have the surgery so she was not in too good of spirits before this was happening. The stress was unbelivable around here. We had to carry her into the car the morning of the surgery, she wouldn't get out of her bed and pulling up to the hospital at 6:00 in the morning was another whole production. Girls are not easy! Now, 4 months post, she said she would tell anyone the surgery is the best thing than having to wear a brace. She is a different person since the surgery, we get along so much better.
Jennifer

[nikyergen]

Theresa, Jennifer, Susanna, Mary Lou, Pat, and whoever else I forgot that reads this post:
Thank you for your note today. Panic stage, you bet, been there on that one. Especially, about the time Crystal got a sinus infection. Was kind of worried about that one, but that is behind us now. I actually slept for the first time in a couple of weeks for more than 3-4 hours. I slept 8 hours, Yeah.
Grouchy teenager, the worst (or at least I think so sometimes), but then she has been getting about as much sleep as I have. I've had to sick dad on her numerous times this week. Social life, for Crystal-not much of one for the last three weeks. I had to pull her out of school, with the superintendent's approval, because so many teachers and students were sick. Didn't need her sick too. Let her go to school for a couple of hours yesterday and for an hour this morning. Let her spend the night at a very good friend of ours last night. We were trying to do something this weekend, but just don't have time. So we did it last night. She enjoyed herself.

Taking care of myself, who has time, everyone else needs to be taken care of. Gosh, I don't think some of them can make a pot of coffee to save their souls. Actually, I have been leaning on my husband a lot more this week. The altenator went out on my pickup today while I was feeding cows. So, I limped it home and called Craig on the celphone and told him when he got home he could finish feeding the cows. Usually, I call him and tell him he can come home now because the chores are done.

French braiding hair, and art, unless you rode Hunter/Jumpers as a kid, then you learn it at an early age and apply it to the human head instead of a horses tail. Terrible thought, huh. We even do what the girls call "CORN ROWS." It's multiple thinner french braids.

Actually, the stress in our house seems much better today. Craig picked Crystal up from school this morning and she went to Walla Walla, WA, and Enterprise, OR with him. He had to deliver semi-truck parts to some customers today. She had a good time. He took her out to lunch at a nice restaurant. I think they enjoyed the time together.

I took the youngest to lunch in LaGrande and the middle daughter had track practice, so I brought her a Subway sandwich. She was greatful, she was hungry.

I am glad to hear all the girls are feeling better. I look forward to being able to report that Crystal is doing better.

More later, cuz I know I will have forgot to ask/mention something.

'til later,
Nikki

[nicoles mom]

Jennifer yes Dr. Boachie is doing the surgery. I'm hoping that Nicole won't freak out the moring of but she could. My inlaw live in P.A. They are coiming here so they can go visit with Nicole. I'm not looking foward to them staying at my home because that moring we go to the hosipal will be crazy. She wants her two year old puppy pete{a maltese} to go with her. And my mom in law is very close to Nicole. She will be crying Nicole will be crying and I don't need this. I hope that my brother in law will pick then up the day of and bring them to the city from P.A. To make my live a little easy. Doesn't look this way and I'm having it out with my husband about them being here. I love them both very much but sometimes I wish they weren"t so up are butts. Nicole will still have to wear a brace not looking forward to this. Dr. doesn't want the lumbar to move. Shes 57 top 55 bottom double cruve. He says she will only have to wear it for about a year. After surgery hes hoping for the top to be 5 bottom 10. He is also going to remove some ribs she has a large rib humb. posterior fusion t-4---t12.

Nikki o my god tonight she went to a school dance about 400 kids in the gym hopefully she didn"t caught everything. But we have a little time if she did. I'm very worried about that. Shes due for a cold hasn't had one snice xmas. Then I may caught it and I need to stay strong for her. My husband is going to fall apart. I had a Bone Marrow Transplant 9 years ago and I still have a low iumme system. So I'm a little germ freak. And if she gets sick I'm sick a week later. Well I will just kiss her alot so I get it sooner then we will be ok. I'm alittle crazy Tonight
Theresa

[nikyergen]

Theresa,
I guess I am thankful for the small rural school my kids go to. K-12 is about 150 kids. So, Crystal's class has about 16 students in it. Some classes are a little smaller some classes a little bigger. I went to school my first year of high school in a big city school. My graduate class would of been 1000 students. My folks moved and I went to a smaller school, which my graduating class was aroun 90 students. I understand the little crazy feeling. I've been that way since I pulled Crystal out of school. I just wanted her to stay healthy and that was the only way I knew it could happen.

I don't envy you having to deal with the in-laws during all of this. If it was me, I'd be putting them up in a motel if I had to. I don't even like my own parents staying at my house. They drive me nuts. They are in their 70's and I have noisy teenage girls, plus every boy in the neighborhood stops by to see if they can impress my girls. Thank God, we live way out in the country and the price of gas is going up. Maybe the boys won't be around so much.

I guess I can say what everyone has been telling me, now that I am starting to feel at ease with things. Things will be okay. The first two weeks are supposed to be the hardest. The big turning week is about week 3 1/2. But, not having been there yet I don't know. However, I am becoming more at ease with things as everyday goes on. The only reason I got out of bed is because I got cramps in both legs and needed to walk them out. Otherwise, I would be nighty night.

I certainly hope your daughter doesn't bring home anything and you catch it. My dad is recovered from lung cancer. 5 years cancer free and just got told that he doesn't have to come in every 6 months. He goes once a year now. But, he catches every little cold that goes around and mom rushes him right to the doctor, because they just escalate with him. So, understand the low immune system. Are you taking anything to help you ward of an infection? It might not be a bad idea to go to the health food store and see what they have. I am not a health food nut, I like my meat and potatoes, but I do use a lot of natural stuff for myself and Crystal. We seem to do better on them than pharmaceuticals.

Let us know how the dance went and if she had a good time. Crystal's prom is a month to the day after her surgery. She thinks she'll be up to going. I told her we would see how she is feeling and that her dad would have to take her and bring her home, if she goes. And only for a very short while. So we understand the dance thing.

'til later,
Nikki

[Mary Lou]

Theresa,

If I didn't know better, I'd say we both have the same mother-in-law! Maybe it's the water we drink in PA that turns them that way. OPEN YOUR MOUTH AND SAY NO!!!! You are under more than enough stress right now and the day of surgery will only be more stressful, so tell your mother-in-law that she can't stay at your house. If you have to, take everyone out for a nice dinner the night before, get your in-laws a nice hotel room and make it clear that only you, your husand and your daughter will be going to the hospital in the morning. You might even want to allow her some time alone with your daughter if that will help your daughter. Right now and for the next several weeks, it is all about your daugher and no one else. Tell her you will call her once you are in the waiting room and she is welcome to wait with you. I don't think you can have too many people waiting with you. The last thing you'll need on the morning of surgery is someone upsetting your daughter more than she might already be that day. Some kids handle it very well, and others freak out.

As for you being a germ freak, now and after surgery is the best time for that. Remember to be a germ freak in the hospital. Feel free to remind hospital staff to wash their hands, clean the bathroom, whatever you feel needs to be done. I personally made it a point to wipe down the table where they always set her food tray, we got new cups and straws often and I washed my hands before touching Jamie and many, many times in between.

I wish you the best of luck. I'm sure you said it somewhere before, but when is the surgery?

Mary Lou

[nikyergen]

Theresa,
I thought about you in-law situation last night. I agree with Mary Lou. It would be worth putting them in a motel and have them arrive at the hospital after Nicole has gone into surgery. Then, they will be there for you and your husband while she is in surgery. My parents aren't even going to be at the hospital the day of surgery. They are taking our youngest daughter for the week and will come see Crystal the day after surgery. That way Michelle doesn't get bored out of her mind and impatient. It isn't that they don't want to be supportive, but Crystal will be so stressed that morning and out of it after surgery, mom said there was no need in adding to the stress. I think I have to agree with her.

My mother-in-law is going over with us. However, she is staying at her brothers house for the week. She will probably come in sometime the day of surgery to be there for us. She is a pretty strong lady for 80 years old and we draw a lot of strength from her. She is the one that is continually reminding us to put our faith in God. She's a great woman and I am glad I have her for a mother-in-law. She is a lot of fun and very healthy. I sure wish my father-in-law was still alive to be their for my husband, they were best friends. But, he will be there, I know he will.

Like I said last night. It is okay to be a freak about her getting sick. I got that way and am so glad I did. Mary Lou is right, insist on the cleanliness of the hospital staff too. Sometimes they just come and go and don't think about washing.

Well, I better get. Going to finish laundry and get packed while Craig and the kids are in town cleaning our masonic lodge and getting the last minute things I forgot yesterday.

Mary Lou, should I take extra towels. I am taking everything but the bathroom sink. Well, at least Crystal is doing that. I asked her if she had the bathroom sink packed and she said she didn't have room for it. I laughed and told her she better unpack everything and get that sink in there and then put everything else back in. She laughed about that one. I always tease her about taking the bathroom sink with her when she goes somewhere.

'til later,
Nikki

[Mary Lou]

Nikki,

I wouldn't take towels. I would only take my personal things. I used the hospital's towels for both myself and for Jamie. Here's a hint: find out where the line closet is located and get yourself a few days supply of towels and washcloths and keep them in your room. Also, grab two or three extra pillows-for behind Cyrstal's back and also for yourself. I grabbed my own sheets and blankets while in the linen closet. This suggestion might come to late since your family is already in town picking up last minute things, but I took cans of soda and snack items and took a few in the room and left the rest in the van. Our hospital had a great family room with milk, coffee, tea and snacks and even some breakfast items, like cereal and pop-tarts, but I didn't know that beforehand. I found it easier sometimes to just eat the snacks I brought rather than leaving the room. Sometimes, crackers turned out to be my lunch, so I was very grateful for them.

Have you covered everything for your younger daughter? I know Tracy felt much more relaxed about me staying with Jamie when I made up calendars for her. One was school activities for the week and the other was who was picking her up from the bus, who's house she would be at for supper, etc. It just made things less stressful for her. Be sure to let your parents bring her to the hospital. I called Tracy immediately after Jamie's surgery was done, but she needed to see her for herself to make sure she was okay. It was hard for her to see Jamie that way, but she still needed to see her.

Tell Crystal to get the bathroom sink out of her bag! She will have a sink in her room! I'm glad she is keeping her sense of humor.

Mary Lou

[nikyergen]

TO ALL:
Today is the day. It is 6am here. Up early so we can get everything done so try to be out of here by 4pm. The girls have a meeting at 2pm they have to go to. So, will leave immediately following.

I've slept all night for the last three nights, which is good. However, this morning my stomach is going 900 miles an hour. I guess I'll get some Pepto to get it setted.

Tomorrow Crystal is admitted to the hospital at 1pm with surgery at 7:30am on Tuesday morning. She is standing strong. I am so proud of her. Her bags are packed and she is ready to go. Mary Lou, she did take the bathroom sink out of her bag. She decided it would be too heavy.

My middle daughter is staying here. She is pleased with where she is staying and will have to come to the house everyday to feed the dogs and cats.

It was incredible how our friends came together yesterday to help us get things done at the ranch. They are also doing stuff for us today, so we just have to concentrate on getting ready to go. They say it takes a village to raise a child. Well, it takes a community to get her through surgery. And, I consider all of you part of that community.

Anyhow, when we get to Craig's Uncle's tonight, I'll try to see if I can use their computer and let you know we got to Portland safe. It's a 5 hour drive, could be a long trip home when Crystal is released.

My thanks and love to you all. You have been the greatest friends in the world a person could have. I'll keep you posted on Crystal's surgery and recovery. All of you are in our prayers. I even remembered my bible.

God Bless You All,
Nikki

[lrmb]

Good luck to Crystal, and courage for you, Nikki! We will be looking for your posts the other side, and thinking and praying for you in the meantime. Look after yourself as well as your daughter. ~Laura

[susannajon]

Hi Nikki,

It's funny how the day before, there's a sense of peace. You've done all the preparation, your daughter is feeling ready, and you know the surgery is necessary to offer you child a chance at a more normal life. I know other people have said this, but I'll repeat it. Take breaks, eat, sleep, take a walk. Keep visitors to a minimum at least the first three days, and kick them out after a few minutes. Be respectful and friendly to the nurses, and they will be kinder to you and your daughter. Do not tolerate, however, any mistreatment or disrespect from any caregiver, doctor, nurse, technician, etc. Keep a journal. Write down what's happening, when medication is administered, and who is caring for your daughter. It comes in handy to remember when the next dose is, and allows you to call your nurse by name. It's also helpful to look back, and see how much she has improved day by day.

I will be thinking of you and sending prayers your way.

[nicoles mom]

Nikki
Wishing The Best Of Luck To Crystal You And Your Family. Your Be In My Prayers. I'm Getting Jumpy Again And Need To Go Calm Down. I'll Miss You. Take Care Of Yourself And Your Baby. Keep Us Posted. Theresa

Nikki And Mary Lou
Thanks On The In-law Advise I Only Wish I Could Sent Them To A Hotel. I'm Going To Have To Go Over My Husbands Head And Tell Her Myself. I Really Don't Know What My Problem Is She Loves Me More Then Her Son. I Guest I Didn't Want To Hurt Her Feelings In Case She Didn't Understand. Xoxox

[jc3]

nikki
just wanted to say good luck and we'll all be here waiting for your posts after her surgery.
Jennifer

[nikyergen]

To all:
Got all the pre-op done. Crystal has started to develope a new curve since her appointment in October. She will fused from T2-L2. So, at this point surgery is a blessing. Dr. even said that he was fusing her a little farther because she started to develop a new curve, which is a little unusual for 16 years old.

Surgery in the morning at 7:30am. I'll let you know how she is tomorrow evening.

All our prayers to you all.

'til later,
Nikki

[nicoles mom]

Spoke To My Mother In Law Today And Shes Not Saying Here. She Will Meet Us At The Hospital. Boy A Ton Of Bricks Just Fell Off My Back. I Guess I Was Fighting With My Husband For Nothing. All I Had To Do Is Talk To Her About How I Felt. Shes A Great Mother-inlaw. Nikki Its Tue Night Thinking About You All Day. Hope All Is Well.
Theresa

[nikyergen]

To All:
Crystal is out of surgery and back in her room. She is doing great. She has been in a reasonable amount of pain, however, the staff here is right on top of it to keep her very comfortable. The doctor told us yesterday he was hoping for a 50% correction. He told me after surgery that he got more than 50% and was very pleased with it.

You should see her lie flat on the bed. Her shoulders are back and straight. She looks absolutely beautiful.

We'll see how tonight goes. I sent dad to the motel early to get some sleep, in case I need him to come in the middle of the night. Crystal has been resting quite well, which I am sure can change.

Theresa, I am so glad you talked to your mother-in-law. I underestimate my mother-in-law sometimes too. And, like you, ended up fighting with my husband for nothing. I guess we need to have faith that our mother-in-laws are woman too and will understand.

Well, I need to get back to Crystal.

My prayers and love are with each and every one of you as we go through these times.

I'll keep you all posted.

'til later,
Nikki

[ANIMAL LOVER12]

I'm so glad she's okay!!! I have been praying for her! I wil continue to pray for a speedy recovery!!!!!

[jc3]

hi nikki
thanks for posting about crystal. I've been thinking of you guys all day. Keep updating us and we're hoping for a smooth recovery.
Jennifer

[pat]

Hello Jennifer and all!

Jennifer, I haven't been on in a while (computer had some troubles!). But, all is well; Jamie had her 5 month check up yesterday, she's fusing beautifully. He told her she can basically do anything she wants. And we see him again in six months. The surgery seems so so long ago. All is well! Thanks for asking! Pat

[jc3]

hi pat
thanks for writing. Glad to hear everything is going great. It's scary when they say they can basically do anything they want.
well stay in touch
jennifer

[susannajon]

Nikki,

So glad to hear from you. My heart is with you these next few days. I know you know this, but stay on them about pain manegement. If Chrystal feels more than a twinge, especially if you see it escalating (her voice will go up an octave and she'll have that pinched look) insist on talking to the pain management team. I had to be pretty aggressive at times when I could see my daughter suffering. Once she was off the PCA and on oral medication, they authorized 2 vicodin every 4 hours, but a max of 8 pills a day. That meant she was maxed by 4 in the afternoon, and wasn't allowed another pill till midnight. I got them to split up the narcotic pain reliever and the Tylenol, so we could do Tylenol every 6 hours, and the narcotic every three to four if she needed it. There's always a solution, you just have to bug them sometimes. Anyhow, hang in there, and please know that I'm thining of you and Chrystal.

[nikyergen]

Susanna,
The pain management team here has been great. The nurses tell me about 20 minutes before they want to do any moving with Crystal. That way I can get her woke up and she can push her morphine button. If they are going to be doing a big move with her they automatically give her an additional boost of morphine. Her morphine level was reduced today and she still isn't using the button very often. Tomorrow will be another day though, as they are going to start weaning her off the morphine and go to oral meds.


Her brace will be ready tomorrow morning, so they may start getting her out of bed. She got to sit up today and felt much better just sitting on the edge of the bed.

How is Grace doing now that you are home? Crystal may be out of here as early as Saturday, at the rate she is recovering. I don't know where she got the strength and power from, but she is determined to not let this get her down.

I have everyone in my prayers. We are all surviving this. I didn't think I would, but I did.

I saw Crystals xrays of Monday and yesterday. I cried when I saw them. Things corrected very nicely and look wonderful.

I am keeping everyone in my prayers.

'til later,
Nikki

PS-It isn't all sunshine and roses, but better than I expected it to be.

[Mary Lou]

Nikki,

I'm glad things are still going well. As for where these kids get their strength, I can't tell you. All I know is they are among the strongest people I know.

Why is she getting a brace? Is it to hold a curve from progressing or is it just for support after surgery? I haven't heard of too many people who get a brace after surgery. How long will she need to wear it?

Remember to take care of yourself.

Mary Lou

[susannajon]

Nikki, That is fantastic that they're being so proactive about pain mangement. If only all of our kids were so lucky! Sounds like you're in a really good place.

My daughter's x-rays are just amazing. I cried too when I saw them. She is so straight! It's a miracle that her "S" curve that went from T3 to L4 was fused with just 5 vertabrae, and she is almost straight!

Let me know if you ant my want my list of stuff you will need when you get home. We feel like we were very well prepared, and she's had an easy day home thanks to all the planning. There is nothing like your own bed!!!

Susanna

[jc3]

nikki
glad to hear everything is going well. Wow, you see last week you and susanna were all stressed and now can you believe the surgery part is over! Sounds like she is doing great and will be home before you know it. I do think the stress before was worse then actually going through it. I mean i don't know if i should say that since i wasn't the one having the surgery, but you guys know what i mean. The stress of the unknown before it and worry was horrible!
susanna - isn't it nicer being the one giving advice on what to expect?
jennifer

[susannajon]

I just want to see my little one running around this summer at the pool without any pain, and without being self-concious about her curvy spine. She is still in SO much pain, although it is certainly better than it was those first few days. I just worry that I've put her through this for cosmetic reasons, and she might have chronic pain as a result of my actions. I know that's not rational, she really needed to get this done, but mother's worry and guilt are powerful right now as I look over and see her suffering. Talk to me in a few weeks, I will most likely be much more confident in giving advice!

Susanna

[lrmb]

Hi Susanna!! I'm so glad things are going well for your daughter :) :) Hopefully her pain will ease off soon... I am still praying for a smooth recovery for all the kids mentioned on here :)

Just wanted to say, just keep reminding yourself, with a curve as big as your daughter's she really needed to get the surgery done. Boachie wouldn't have done it if it could have been avoided.

Take good care of yourself as well during these stressful times! All the very best. Laura

[nicoles mom]

Hi nikki great to hear things are going well I will be in in shoes soon. I'm going to keep track of Nicole pain meds too. I haven't gotton through yet but I,m starting to feel perpared.
Jennifer the stress before is horrible. My problem is I worry about everyone. 1ST Nicole than my husband will he make it through. He is the weak one in my family. I'm the rock but I guess most women are.

Theresa

[jc3]

hi susanna
she will be running around at the pool this summer i promise you. I can totally relate to what you're saying about the worry that you may have done it for cosmetic reasons and you don't want her to have pain later on. I think we all worry about that. Nicole never had any pain before her surgery so i felt bad putting her through it fearing that the pain after the surgery would never go away. She is doing great, i know her back doesn't feel back to normal yet and wonder if it ever will, but i don't think we had a choice with curves as bad as all our kids who are undergoing surgery. I don't know if we'll ever stop worrying about them knowing what they have been through and i just worry about what their future holds for them. I just pray they don't have problems later on in life. It's pretty funny seeing nicole run now, you can tell she doesn't feel comfortable doing it, not that it hurts, i just don't think she knows how to run with her new back.
jennifer

[nikyergen]

Mary Lou,
Crystal got a brace because her upper body pushed forward enough the doctor didn't want her to be doing that from habit. He also wanted to be sure that the surgical site is well supported. She should be in it from 8-12 weeks.

Today has been a little rough for her. Her body is starting to wake up and realize something is different. Muscles, nerve endings, you name it, it is sore today. But, she still doesn't complain much. She said that she knew it was going to hurt and she didn't see any sense in complaining about it.

Her catheter was removed this morning and she has been on the commode. After her brace was fitted, she took a few steps and was ready to get back to bed. All the activity today wore her out. The CNA washer her hair for her this morning and that made her feel much better.

She is running a fever and they are giving her tylenol. The nurse told me that is pretty normal when these kids are on morphine.

Theresa, keep track of her pain meds. We have done the same for Crysal. When the nurses want to do sometime, I ask them to please give her time for her meds to work. They are really good about it.

It amazes me that there are about 20-30 kids up here today, all of which have had surgery. There aren't any of them crying. The nurses get on top of the pain thresholds and stay with them. That seems so incredible to me.

Boy, do I understand your being stressed. I was just there a couple of days ago. But, you will soon be on the other side, like we are. It will amaze you the bonding that goes on between the parents too. A couple of us wives had to say goodbye to our husbands yesterday, as they had to get back to our respective homes. We were a motley crew last night. Sitting on the audomans in front of the nurses station. We were all lonely and missing the support our spouses had given us the last couple of days and weren't quite sure what we were going to do without them. But, we were visiting and having a nice time.

Jennifer, you are so right about the stress and worry before hand. It was much worse, and now I wonder why I was so upset. Things went like clockwork and Crystal is doing great.

Well, I need to check on Crystal.

Our love and prayers to you all.

'til later,
Nikki

[nicoles mom]

Hi Nikki
Sounds like everything is going as well as expected. I can't wait for this to be over. My husband is staying in the city for 3 nights then going home also. Thanks for sharing your experience between you and susanna. I will know what to do. I thank you both from the bottom of my heart. I will definitely keep track of the pain meds. i will be looking for your posts.
In my prayers
Theresa

[Lura]

Nikki,

Hi. I'm posting in this thread instead of the one I started since you are here too. Your info. on how Crystal is feeling is invaluable to me! Alex doesn't say when he is in pain so asking the nurses for meds before doing anything which may cause him pain is a great idea. Also, knowing that today has been a little tougher for her is good to know as well.

Scott will only be with me the 3 days surrounding surgery, but my mom is with me for the long haul. 1.5 weeks to go!!

Praying for you!!

Lura

[jc3]

hi nikki
it sounds like things are really going great. She is doing so great you guys will be home before you know it.
That is great that there are alot of kids there so you have some support from the other moms. When my nicole had surgery she was the only kid on the floor so it really lonely when my husband would leave at night. I used to walk around talking to the nurses or looking for someone to talk to.
thanks for all the updates keep them coming
jennifer

[nikyergen]

The best thing about going to Shriners is that it is all kids. And when the kids are feeling good enough to be kids, they get to be kids.

We're home and I have made several posts with a few feelings and experiences.

'til later,
Nikki

[jc3]

hi nikki
so glad to hear you guys are home!! I can't believe it's over. How is she feeling?
jennifer

[nikyergen]

Jennifer,
Crystal is doing much better now that we are home. She is a little more content. I am proud of her though. No matter how bad she hurt in the hospital, she never got nasty or rude with the staff there. She was really pretty good with me. The only time she got real nasty with me, I was trying to put her brace on her and she started to bite my head off. I just let her lay there with her brace half on and went and got a nurse to finish the job. That was about the only time she got nasty with me, and I think it was her impatience that got the best of her. But, she has been smiling a lot today. It is good to see that. Her biggest complaint is her right shoulder is really sore. She said it actually is more sore than her back. So, I'm not sure if a heat pack or cold pack might help it. Got any ideas on that one.

She's watching a NBA game right now - TrailBlazers vs. Kings. She is excited for the next 3 months to go by. Doctor said she could probably start light running then to start getting in shape for basketball season. He sees no reason for her to not be able to play next November. So, she is following his rules to a tee.

Tell Nicole that she will survive this. There are moments during the day, about the time pain meds are due, that Crystal wonders if it was worthwhile. But, then when she is feeling good and can take a deep breath, which she could never do before, she says it was worth while.

It will get better once you get done with surgery and can go home.

Love and prayers to you.

'til later,
Nikki

[jc3]

hi nikki
it's great to hear that crystal is doing good. Can you believe that it is over. I definitely thought the stress before the surgery was worse. The shoulder pain is very normal and common. Alot of kids really complain about that. My nicole really didn't complain about it too much, but i every once in a while she says that her shoulder bothers her, but then it goes a way. I would think a heating pad or ice would probably be good. How is Crystal doing with the brace? Did she have to wear one before her surgery?
jennifer

[Mary Lou]

Nikki,

When is Crystal's shoulder bothering her? Jamie discovered that in the beginning, if she sat on the floor too long without anything to support her back, her shoulders would hurt. If she sat in a chair with a high back for awhile, it would go away without ice or heating pad. Is the brace pushing on her shoulder?

Jennifer,

Has Nicole complained in the past few months of her back being sore? Jamie has commented more recently about her back being sore than she did right after surgery. I'm guessing that it is because of going to therapy (over an hour and a half each day) twice a week.

Mary Lou

[susannajon]

Nikki,

Shoulder pain is something I hear on this board all the time. From what I understand it can take up to a year for the muscles to adjust to their new position. My daughter complained a lot the first week of her shoulder getting a spasm, but that has calmed down a lot since we've been home. We bought a giant heating pad (18x30) and she finds the heat to be very comforting.

Also, we got a massage wand. Sometimes, when it's not quite time for the pain meds, she gets a little despondent and she starts to cry and wonder if the hurting will ever stop. I have found that the massage wand is kind of a pattern interrupt. The vibration seems to distract her from the pain somewhat, and it's been a good coping tool. She uses it on her neck and shoulder and it really seems to help.

Susanna

[jc3]

hi marylou
nicole was complaing about a month ago and that's where Jamie is now, she would complain on and off. Somedays things would bother her and other days she was fine. She hasn't complained in a while now, so i'm happy about that. When we went back to the dr. he gave us another 6 weeks of physical therapy, which my husband is yelling at me to call and make an appointment for that, so maybe next month jamie won't be complaining at all lol. I'm sure there will be some achy days. Jamie's physical therapy is long, nicole's was only for a 1/2 hour. What do they have her do there?
jennifer

[Mary Lou]

Jennifer,

Jamie does about 1/2 hour of exercises in the pool-leg stretches, leg kicks, "crunches", arm exercises with floats, walking on the treadmill (Do you remember hearing about the football player who did his rehab in a Hydroworx pool to be able to play in the super bowl? That is the same exact pool Jamie is working in! In fact the company who invented the pool asked for our permission to follow Jamie's progress in the pool as not too many kids use this pool) and about 5-8 minutes in front of the jets. She then goes upstairs, for about 1 hour to 1 hour and 15 minutes.There she sits on a large ball and does leg lifts and stretches, she uses straps that are stretchy and attached to the wall to work on her arms, she does a lot of leg work on the table, she does "crunches", and I can't remember the rest. Jamie has always had tight legs, and that is limiting her bending ability. We had hoped to be done with therapy by now, but she is going to be re-evaluated today and they are planning on asking for another prescription. She has already had seven weeks of therapy and this is the second time they asked for a new prescription.

Mary Lou

[jc3]

hi marylou
that sounds like a good workout. It will sure get her back into shape. When does she go after school? I'm sure they will keep asking for prescriptions from the dr. because they probably don't want you to stop coming so they can keep getting paid. Does she do alot of bending? Nicole is allowed to bend now, but i don't think she does, i think she still bends at her waist.
Jennifer

[Mary Lou]

Jennifer,

When we started out, Jamie went to therapy during gym class, but since she goes for such a long time now, we go after school. Jamie was re-evaluated today and they would like to try and get two more weeks. She has made good progress, but her legs are still very tight and that is limiting her bending somewhat. She doesn't really bend too much. She is so use to bending at the knees, that she still does that. However, when she starts being allowed to lift, that is the best way for all of us to lift, so it's a good habit to be in. I do try and remind her to bend at the waist, because with as much fusion as she has, that is the only place she can bend from.

Mary Lou

[Risa]

Hi Everybody,
Was any of your kids legs tight because of the scoloisis? Marisa right leg is so tight her curve is to the left which makes her bend to the right and her leg is tight. Risa