new mom preparing for surgery [Archive] - National Scoliosis Foundation Forums

Tiny

04-04-2005, 08:23 AM

I'm logging in on my daughter's post. She posted a few times when she first found out she was to have surgery, but got busy in school and so I'm taking over because you mom's have been a wonderful source of information and inspiration as well as your daughter's and son's. So Thanks for all of your insight, and congratulations to those of you on the recovery side and good luck to those of you preparing for surgery and continued prayers for all of you.

Tara(Tiny) had her first set of pre op tests on Friday and the reality sure set in for me. Tara is so layed back and takes it all in stride and doesn't really care to talk it to death, and I on the other hand think about it practically every hour of the day. Nobody in the family gets this, so Thanks to all in the forum in advance for the questions and venting that may follow in the next several weeks. Her surgery is May 16. Thanks again and good wishes.

Linda

KRIS ATKINSON

04-04-2005, 09:22 AM

I know what you mean about thinking and talking about it as a mom. My daughter doesn't want to talk it to death, and I have to be quiet around her. She seems to think if she doesn't talk about it, it is easier to handle it. Since we have 2 months yet until her surgery, and I don't want her to chicken out, I don't talk to her much about it. That is good that your daughter, Tara, is eager to share on the net. Maybe mine will get there as surgery gets closer. Take care, Kris

nikyergen

04-04-2005, 09:46 AM

Linda & Kris,
I think all of these kids avoid talking about their surgeries. It doesn't seem to make a difference if they are boy or girls. They just don't want to discuss it. Crystal had surgery 3/15/05, and she finally talked about it at her pre-op appointment the day before her surgery. The doctors and nurses were great with her. They talked directly to her and not to my husband and I.

Linda where is your daughter having surgery?

You will find that as you get closer to your daughters dates, you will get more keyed up. That is perfectly normal. Everyone of us mom's has been there on that. You'll feel like your having to pull yourself up by your bootstraps, at least I felt that way. I got to where I was only sleeping a couple of hours at a time. I finally slept well the final three nights before surgery. I cried when they took my baby from me into the surgery suite and cried when they returned her to me in recovery room. There are a lot of emotions that absolutely run wild and you can't control them. Then, after surgery you take this huge deep breath and are so relieved to have your baby back.

If you have any questions about anything, please ask, ask, ask. There are some incredibly wonderful mom's here. And, all of them know how you feel at the moment and know how you will feel when surgery is over.

Our prayers are for all of you entering this scary time with your child.

'til later,
Nikki

Carmell

04-04-2005, 11:19 AM

Sending best wishes to Linda and Tara - we'll be thinking of you on May 16. Surgery will be here before you know it. Let us know if you have any specific questions.

phaden

04-04-2005, 03:41 PM

I on the other hand think about it practically every hour of the day.

My daughter's surgery is scheduled for 2nd May. It's slowly becoming basically all I think about. I get up and go to work and run the house and so on, but I'm absolutely just faking it. Underneath all that calm, grown-up behaviour is a hysterical screaming person going NOOOOOOOO!!!!!!!!

Realised I wasn't actually faking it all that effectively when, in staff meeting last week, I practically took somebody's head off for behaving in just their normal annoying way. Been putting up with it for years, but at this point, I could have gladly turned the hose on them.

I think this is all actually pretty normal. Mums are biologically designed to be vigilant about danger to their children, and that's all we're doing. If we had to rescue them from a burning building, this focused hyped-up state would be just right. Since what we really have to do is sit in the waiting room, it's not so adaptive.

But you're for sure not going crazy, or anything. Or if you are, so is every Mum on this forum as the surgery date gets this close.

Hang in there.

Tiny

04-04-2005, 05:07 PM

for your comments and thoughts.
Patricia, it is mind consuming and comes through as irritability for me too. Especially the day of the pre op stuff and there wasn't really anything intimidating at all. I guess you just want to know how your child is going to handle it all and that's why I cling to the success stories here. Your daughter's surgery is coming up soon. I'll be thinking about you guys.

Nikki, Tara is having surgery at Children's Mercy in Kansas City. She'll be the big kid on the block. She's hoping for a private room. Does anyone know if that can be requested?

Linda

lorrie

04-05-2005, 09:26 AM

Hi Linda
We're waiting for surgery too so I really understand what you mean when you say it's all you think about. Even when I think I'm concentrating on something else there's a bit of my brain going round and round and round it and I'm not really being a rational person at the moment. We still haven't got a definite date - last we were told was mid-April - and it's making me crazy not to be able to get anything organized. My husband teaches and it's not so easy for him to just take time off work. If we don't hear anything in the next day or two I think I'll have to phone up and hassle them some more - otherwise mum is going to be in the locked ward!
Best wishes
Lorrie

nikyergen

04-05-2005, 09:36 AM

Linda,
I know at Shriners Hospital's they try to put their spine patients in private rooms. That is because they have to come in with them to turn them from side to side so often and don't want to be distrubing others. However, if they get a lot of patients in, you do stand the risk of losing your private room. Crystals only had one bed, but had room for a second one if needed. Crystal got a private room with a view, believe it or not. It was so funny because as we were on the elevator, going up to the ward, she said it would be neat to have a private room with a view. I don't know if private rooms are something other hospitals do for spine patients.

You could call the hospital and ask, but there is also a possibility that your insurance won't pay the full rate for a private room and spine kids are in the hospital 5-7 days. That could end up being a big chunk of money you have to pay. Check with the hospital and the insurance and then decide if you want to pay the difference.

Our prayers are with you as you get closer to your dates.

'til later,
Nikki

Tiny

04-05-2005, 10:31 AM

Lorrie, that would drive me crazy too, since that could be just a couple of weeks off. The brighter side is you won't have as much time to stress over it. Wouldn't they have to give you at least 3 weeks to get the pre op work done and the blood donated? I hope you find out soon.
Nikki, thanks for the info. I will call the hospital and the insurance company and look into that.
How do your kids handle losing their modesty in the hospital? Are they just too out of it to care? And what about medications that they are on. How do they take daily meds if they can't eat or drink?
Linda

nikyergen

04-05-2005, 11:19 AM

Linda,
The nurses, whether they are male of female, are very good a helping the kids with their modesty. They are very respectful of their privacy. Crystal had a male nurse several times, and he actually became one of her favorites because he really respected her 16 year old privacy.

Crystal has her asthma meds that she has to take daily, orally. They do let them have them. Crystal even took hers the morning right before her surgery. But, be sure you let the doctors, nurses, especially the anthesiologist (Sp) and anyone else that your child has daily medications they have to take. They do make provisions for those medications. We took Crystal's with us, and they put them in with her meds behind locked doors. That was for our protection and theirs. They were very good about giving them to her every day. We only had the one nurse that was a problem. She said there was no doctor orders for them. I told her otherwise because Crystal has to have those medication to just get along in a day. One of the other nurses told her that if the parent brought them in and they were prescription that yes they were to be given.

Let me know what you found out about your daughters room.

'til later,
Nikki

Carmell

04-05-2005, 11:33 AM

Linda,

Our children's hospital has all private rooms, except for the infant unit. They have two beds to a room. It is SO NICE to have a private room to recover in. This is a HUGE surgery. It's nice to be able to be in peace, as much as possible.

Even tho Tara is "older" I would call the hospital and talk with the Child Life Dept. Has Tara ever had other surgeries recently? She may want a tour of the hospital so she is somewhat familiar with what to expect. The Child Life people are great to help ease the stress and worry about surgery.

Good luck and keep us posted.

Tiny

04-06-2005, 07:34 AM

Hi Carmell. Tara hasn't had any surgeries, and she expressed some concerns about her being a little older to the Physical Therapist when we were there for her pre op work. He was really good about setting her mind at ease. I think it might be a good idea to schedule a tour with our next appointments.
Linda

nikyergen

04-06-2005, 09:40 AM

Linda,
You have mentioned how old Tara is.

Yes, I would most definitely schedule a tour at your next appointment. This might set Tara at ease. Did you call your hospital and insurance and find out about a private room. Like I mentioned, sometimes spine patients automatically get a private room.

Let us know if you have any questions.

'til later,
Nikki

Tiny

04-06-2005, 11:22 AM

Nikki, Tara is 20. It really puts her at the upper end of being able to treat her in a Children's hospital, but we've been with this Dr. for a long time and she trusts him and we were happy he would still do it. I did finally hear back on the room and they are set up as private rooms. So I'm happy for that. She has already said she doesn't want visitors until she is home. And she made me promise not to take pictures, which will be really hard for me, but I will respect her wishes. I tried to get her to let me get a couple of back shots the other day and she wouldn't let me. She is very aware that her back looks bad and has worked hard on her posture to make it appear as good as possible.

I do have a couple of questions. Someone mentioned one day about their daughter having a fever. Is that a common thing, and what causes that?
Also, I haven't really heard anyone mention that they were alarmed at how swollen, puffy, and attached to tubes they were when seeing their child for the first time. Is it not all that bad, or are you just prepared?
Linda

nikyergen

04-06-2005, 11:52 AM

Linda,
Tell Tara our prayers are with her. She has every right to be uptight about this surgery. Any surgery is scary. And, this is a big surgery. I am so glad Children's Hospital is still going to treat her. That is wonderful. She will get wonderful care there.

Crystal had a few visitors in the hospital, but she kind of slept right through them. Since we were five hours from home, it was friends that she had in the Portland area and direct family members. We still kind of keep the number of visitors limited at home. She still gets tired quickly. She is almost off of pain medication, other than regular tylenol. I think I am going to have to get one more refill on codeine and then that will be it.

Crystal ran a fever soon after surgery, but they quickly get on to that. I think it is pretty normal. I was almost in a panic about it and the nurses reassured me that was normal after such a big surgery. It is just the body trying to fight everything off. They gave her tylenol for the fever.

Crystal wasn't hooked up to a lot of tubes when she came out of surgery. She had an IV in each hand, an oxygen mask, and a heart monitor. She was swollen, but still very recognizable. The reason they are swollen after surgery is that they are placed face down on the surgery table and all the fluids in their body go to the lowest points, unfortunately is their face. Crystal has a posterior fusion only. I understand that anterior fusions are more involved and the kids have more tubes and stuff coming out of them. Crystal didn't even require a drain in her incision.

Pain Management. Don't tolerate any nurse telling you they can't do anything for pain until Tara's time is up for her next round of pain meds. They can and should do everything in their power to keep Tara from having too much pain. She won't be 100% pain free, but they can keep it tolerable. If the medications make her sick they can give her phenigrin for that. If you don't like what a nurse tells you be sure the let another nurse know or the doctor. We only had one problem and I got in the middle of the nurse and it never happened again. The next nurse coming on shift asked what happened and I told her. She actually told me the other nurse was out of line and to let the doctor know if it happens again.

I guess I went in expecting the very worst and saw, what I would call, the best. My daughter still looked like my daughter, even with a swollen face. When you go into recovery to see her before they transfer her to her room, if you have questions ask. The recovery nurses are very good at explaining what things are for.

I am so glad Tara has a private room. That will make things so much easier. She won't have to worry about staying composed. Don't be alarmed if she lashes out at you. Two things are causing that: 1) the pain and 2) the drugs. I still hate it when Crystal has to take a codiene during the day. She can get pretty wicked on that one. She tries to only take it at bedtime, then the wickedness is gone by morning.

Crystal, at 16, can really understand how Tara, at 20, feels about her back. She has always worked hard to stand up straight. Her back hurt her all the time. No matter how hard she tried to stand up straight her back was still crooked. She is so proud of her back now. She has her prom in two weeks and is wearing an open back dress that laces part way up. I asked her if she wanted to hide her scar. She said "Nope, I am not ashamed of my back anymore." Please pass this one on the Tara. It may help her along.

Crystal has wanted this surgery since she was very young, 8 or 9. So having this surgery was a dream come true for her. She not only stands up straight now, but she is 2 and 1/4 inches taller now and feels great about herself.

Well, now that I have written a book for you to read, I better get on with my day.

Love and prayers to you.

'til later,
Nikki

Carmell

04-06-2005, 12:11 PM

Hi Linda,

Just wanted to agree with Nikki about a few things...

1. Pain management is the key. Talk to the Pain Services people BEFORE the surgery. You and Tara need to know what to expect, so you can keep the nurses/staff on the right schedule. If Tara is worried about being in pain after, have her (or you) ask the Pain Services people what they can do for that. Many hospitals allow PCA (Patient Controlled Analgesic) pumps. This allows HER to push a button and administer pain medication on an as needed basis. They are great for the first days after surgery. Like Nikki said, they CAN do something if she were to have breakthrough pain. Try not to let the pain get that far. It is MUCH better to stay on top of the pain med schedule than to let her get too uncomfortable. Her body needs to rest to recover well.

2. Visitors - if she doesn't want visitors, don't have them. She probably won't remember if they come the first day or two, but, it is still her wish. Respect that.

3. Moods - if she gets angry and yells at you, don't take it personally. She is scared and hurting, and you are the convenient one to take it out on. YOU need to be rested for the recovery time too. I'm sure she will lean on you more than she or you realize those first weeks.

4. Post-op recovery - If Tara has anterior and posterior surgery, she will likely have a chest tube (or two) draining the fluid from around her lungs. This adds another level of nursing care. Most posterior-only patients don't need chest tube drains. Most patients who have surgery that lasts 6+ hours will be puffy from laying on their stomachs for many hours. The swelling should go down. They will also watch her hemoglobin levels to make sure she isn't anemic or has any other blood problems. Braydon needed a blood transfusion 48 hours after his rod placement surgery. Within a few hours of the transfusion, he was a completely different child, and very well on his way to a smooth recovery. Before then, very different story. Don't be alarmed by her "look" post-op. It is very temporary. Also, don't be afraid to ask what things are for. The staff should let you know everything about what they are doing.

I hope Tara does well, emotionally. We met a mom who's 21 yr old daughter just had scoliosis surgery at our children's hospital. Her daughter was not happy about being there, and fought them the entire recovery time in-patient. Her emotional state will determine some of how well and how quickly she recovers. What makes her happy? What kind of relaxation things does she like? What music does she like to listen to? Bring things to the hospital that will be for HER. The more comfortable she feels, the better her recovery should be.

Good luck and we look forward to hearing updates.

lorrie

04-06-2005, 02:18 PM

Hi Linda
I think a bit of fever after surgery is pretty normal - Genevieve has always tended to run one for a day or two anyway after surgery (she's had several ops over the years although this is way the scariest).
Tubes and monitors and such are a shock when you first see them but it's amazing how quickly you get used to them. You watch your child so closely when they start disconnecting monitors - they get to be quite comforting.
Still no date for us - I'm going to phone up tomorrow. We've actually had lots of time to stress as we did get a letter at the end of January saying Genevieve would be admitted in 6 to 10 weeks with pre-op 2 - 4 weeks before that. My stress levels have been rising ever since.
They tell us they only need a day for the pre-ops. It's not normal practice in the UK to donate your own blood for ops so we don't need to put her through that at least.

Can't really say anything about the modesty issue - Genevieve is entirely dependent for her personal care etc anyway so it's just never been an issue for us.

Good luck.
Lorrie

Tiny

04-06-2005, 06:15 PM

Thanks for all the info. It is so helpful and I'm taking notes in my "surgery book" on everything you guys tell me. When I saw someone mention a journal I decided to start one right away.
Lorrie, I can understand your stress if you have to be ready in a day's notice. I would be calling as well.
Carmell, Tara is having posterior surgery fusing T6-L3. So hopefully she'll have fewer tubes then. So if Braydon needed a transfusion 2 days later, did he have a tube in his incision site and is that where he lost blood? How was it that he was different before the blood transfusion?
Emotionally, Tara will do great. She's been in a lot of pain the last 3 years. Especially this past year. So she is definitely ready for this. She's just so layed back about it all that I feel I have to remind her it's major surgery and will be a difficult haul. I think where she is nervous is not being in control of herself post op. She thinks she is going to be taking summer classes 3 weeks post op and be back on the soccer field Aug. 15. I hate to have a negative attitude, but everything I have read here tells me that is a long shot. Her physical therapist at the pre op appointment I think prepared her a little more for the idea that maybe she should reset her goals just a little. Better from him than from me.
Nikki, I think it is awesome that Crystal is so excited about her prom dress. I remember shopping for those perfect dresses and I'm the only one who Tara would trust to shop with her because I would make her turn around first thing to see how her back looked in it. Most moms were checking out the cleavage! I was checking out the back! There were so many dresses we had to turn down. I always loved the one's that laced up the back and she just couldn't get away with it. I hope Crystal has a wonderful time!
So, how soon does the puffiness go away and how high does the temperature get?
About the pain management. Who is this pain management team? Is it different than the nurses? Who do I discuss the post op med protocol with in advance?
Also, they told Tara to take an iron supplement. She is taking a vitamin with iron which is giving her 100% of the RDA. Does she need more than 100%? As it is, it is giving her some constipation problems and this is another concern of mine when she is recovering as well. If she is already having problems, what can she expect when her intestines start working again?
Thanks for all of your insight.
Linda

nikyergen

04-06-2005, 07:03 PM

Linda,
I just hope all of our comments are helpful to you.

I hate to upset Tara, but soccer will be absolutely out of the question for at least 9 months, and most likely 12 months. Crystal had to plan her surgery around her basketball season.

Swelling. Crystal's swelling went down in a couple of days. She looked pretty normal by day two-three after surgery.

Temperature. Generall speaking, it's low grade. Nothing to be alarmed about and very normal after surgery.

Pain Management Team. Can be a special group of people that all they do is pain management and nothing else. Or it can be the Registered Nurses. It depends on each individual hospital.

These are all very good things to ask during your pre-op appointments.

As far as the iron goes, call your doctors office and talk to his nurse. She should have a good answer for you. Crystal didn't have to donate blood and didn't require any iron before surgery.

If Tara is having only posterior surgery, she shouldn't have to many tubes hooked up to her.

The hospital will want her digestion system up and working before they let her go home. They will monitor it closely.

Isn't it interesting that when you have other things your daughter worries about, cleveage is no big deal. Backs on dresses have always been an issue for Crystal. Now she is so excited to not worry about it. I can't wait to you guys are there. It is a great reward.

Love and prayers.

'til later,
Nikki

Tiny

04-07-2005, 08:21 AM

Nikki, since Crystal is starting school again keep me posted on how that goes. Tara needs to take a 4 hour Chemistry class this summer which would start 3 weeks post op. It's a 4 night a week class for 6 weeks. I'm just not so sure she'll be ready for that, so it will be helpful to follow your experience.
Also, do they start an oral antibiotic before surgery, or just add one to the IV? Is there swelling in the spine area? Thanks
Linda

nikyergen

04-07-2005, 09:20 AM

Linda,
There were antibiotics put in Crystal's IV, but I don't remember if they started it right before surgery or after surgery. Some of that real immediate stuff is a blurr to me. But, I do know it was started right away.

There was swelling in the tissue around Crystal's spine area caused from the incision, but it went down in a few days.

I really don't think Tara will be able to handle a 4 hour class 4 nights a week at three weeks post op. Some of these decisions she will come to on her own. Right now she is at that invincible stage and nothing is going to slow her down. Don't worry to much about it though. It will solve itself. She will probably be upset about it too. Crystal goes stir crazy. She spent about two hours yesterday getting up and down and pacing around the house.

Crystal decided yesterday that Monday was a huge day for her. It absolutely took all her energy and she has been trying to recoup the past couple of days. So, she isn't planning on going back until next Monday. I told her a day at a time was fine.

Hope I answered your questions. If you have more, just ask, ask, ask.

'til later,
Nikki

Carmell

04-07-2005, 10:40 AM

Hi Linda,

Braydon needed a "boost" transfusion 48 hours post-op because his blood count numbers just weren't bouncing back to normal. The actual blood loss during surgery was minimal (they didn't tell me exactly how much, but it wasn't enough to warrant an immediate transfusion). During the first 48 hours, he was still intubated and sedated. When they tried to prepare him for extubation, he was lethargic and didn't look good (coloring, eyes, etc.). When they did the blood work and saw that his blood counts weren't quite what they needed to be, they transfused him. Within a couple of hours, he was fully extubated, sitting in bed and hungry.

Having a low-grade temperature is normal because the body is in such a massive recovery mode. So much of the body has been disrupted and a temperature is a defense mechanism. If the temperature stays high for a few days, not good. That usually means there may be infection somewhere. Braydon would spike a fever when his pain would go out of control. Once the pain was controlled, the fever would go away. Everyone is a little different.

The puffiness depends on how well they begin recovering. Most the time, within 24 hours most of the puffiness is gone because they are no longer face-down.

At our children's hospital, there is a Pain Services Department. It is made up of anesthesiologists and nurse practitioners who's only job is to control pain for the patients in the hospital. I'm sure most hospitals have some type of pain services group. Call and ask. It is very important, I promise! These would be the people in charge of the pain management plan that the nurses would be enforcing. Talk to them (the Pain Services people). Have them make sure there will be someone in their dept on-call in case you need to have them check on her at a time when they don't normally check on patients. This would be for YOUR peace of mind. You need to know what to expect so you can make sure Tara gets the best care possible. Those first few days post-op can determine how well her recovery will be.

You mentioned Tara is taking a vitamin with an iron supplement, and its causing constipation problems. Honestly, the worst post-op problem she'll have will probably be her constipation and getting her bowels moving again. This is Braydon's biggest problem, always. In addition to the pain meds, make sure they order/schedule a stool softener for her to start taking as soon as she's able to keep liquids down. Constipation and bowel issues are a huge problem if you don't stay on top of it from the beginning. Braydon also requires a laxative because of his slow motility normally. This is something to talk to the docs about. Talk to the docs who will be ordering the medication for her post-op recovery.

The antibiotics are usually given every 8 hours during post-op recovery, via an IV. She probably won't take any before the surgery, unless she has a medical condition that requires prophylactic antibiotics.

Good questions! I hope you are doing well and that everything will go smoothly.

olwyn

04-07-2005, 10:55 AM

Hi Lorrie
I am new to this forum and noticed that you are also from the north east of England are you under Mike Gibson at the Freeman?? My daughter is scheduled for surgery (posterior fusion) in July......she will be pre donating blood 3 to 4 weeks before her op
I tried to send you a private message but was unable to.
Hope to keep in touch with you via this forum
Olwynx

Mary Lou

04-07-2005, 11:42 AM

Linda,

I'll try to address some of your questions, but if I miss some, please ask again. Jamie was swollen when I first saw her, and the nurses in the recovery room said the swelling had already gone down by about 50% before I saw her. I didn't mind the swelling, but it was a major shock to my mom and I had warned her that she would be swollen. I could literally sit and watch the swelling go down. Tubes and things--there were two things that surprised me and forgive me, but I never remember the proper names for them. There was an I.V. type thing (they used this to administer meds and also to draw blood) in her neck and also a tube down her nose going into her stomach to drain stomach acids. I know not everyone has the tube done their noses, so I really wasn't prepared for that one. She also have a regular I.V., catheter, drain tube and she had an ice pack on her groin area for something they needed to use during surgery. They tried once to start an I.V. before surgery and we were told they would start it once she was asleep. Jamie later told me they started it before she was asleep, but they asked her first if she minded if they tried again. Jamie had an antibiotic started in the O.R. and received them through her I.V. for about two days after surgery.

Mary Lou

Tiny

04-07-2005, 01:31 PM

Marylou, wow, she had a lot she was hooked up to. Did she mind, or was she too out of it to realize it? I jotted all of it down, so I can ask to see what may be the possible tubes she'll have. I'd rather be totally prepared. I don't want to lose it the first time I see her. Was she awake when you first saw her in recovery and how soon was that after surgery?
Carmell, thanks for the explanation on the transfusion. I didn't know how they were able to determine if one was needed, but it's actually from a blood draw. Do they take blood a lot when they are in there? Tara has been taking 2-3 stool softeners a day and probably 1 or 2 laxatives a week since she started the vitamin with iron, which has been a couple of months. So I'm sure it will be an issue when she's in the hospital. I'll defiinitely make a note to discuss that.
Nikki thanks for the input about the class. I had a feeling it would be pushing things. I'll let her know and see what else she can work out. Other than the energy it takes physically to go and sit through class, would you think she would be in a mental state of mind to study...for example an online class or a TV class, or will she still be taking too much medication?
OK. Lots of great information here. Thanks tons. It helps tremendously.
Did your kids lose weight during this whole process and have they put it back on? Did they get an appetite in the hospital or once they got home, or does the medicine they are taking mess with their stomachs too much?
Thanks.
Linda

Carmell

04-07-2005, 02:41 PM

Me again! (Hope you aren't bothered by my ramblings)

Another thing you may want to ask about before the surgery is if they will be able to inject LOTS of numbing agent into the incision directly. This helps reduce the post-op incisional pain. This may also be a factor in how "awake" she may appear when you get to see her. Since she's having posterior-only surgery, she probably won't be on a breathing tube, and she shouldn't have a chesttube drain. Both are good things, since they can be kind of overwhelming in the beginning. Tara herself will probably not be aware of the first couple of days. They usually do a good job to keep them pretty medicated. She won't be aware of her appearance at all unless someone gives her a mirror.

Again, since she's having posterior only surgery, they probably won't test her blood quite as often as they would if she were to have anterior surgery. Its just a bigger deal all the way around. Ask them. Find out how much they monitor the blood during the first day or two post-op. With Braydon's expansion surgeries, they don't draw blood at all. Its an individual thing, I'm sure.

Braydon is prone to being very nauseaus after surgery, so we've learned to give him lots of anti-nausea meds. This actually helps his appetite. As soon as he's alert enough to recognize he's hungry, he'll usually eat quite a bit of something, then go another 24 hours or so without eating anything. This can be complicated by the constipation too. Just keep an eye on things, and don't worry about pushing her to eat. Drinking is more important than eating.

She may or may not lose weight. That's a very individual thing too. This is a HUGE surgery. Her physical body will be easily exhausted with any amount of effort or exercise (even walking up stairs or down the block). Her appetite will depend on how well she feels. It may not hurt to have some supplements on hand for her if she doesn't want to eat. Boost drinks (or the like) are great to give them calories without much effort in chewing or eating. Just a suggestion.

The pain meds she will go home with will also complicate the constipation. Most narcotics slow down the GI system and cause havoc with their bowels. Keep that in mind if she complains about having a stomachache, but is taking her pain meds. Constipation can be a problem for a long time if you don't stay on top of it (I know, a repeat of what I've already said).

Another thing I didn't mention before, and I didn't notice anyone else say, is that some patients have issues with muscle spasms. The incision is cutting into MAJOR back muscles. Braydon needed to take Valium (muscle relaxant) for a couple of days post-op to keep the spasms to a minimum. You know its a muscle spasms when the pain is a sudden, sharp pain in a general area of the back. Some docs don't think muscle spasms are important enough to give medication for, but, its something to ask about.

All done now ;)

Mary Lou

04-07-2005, 03:02 PM

Move over Carmell, it's my turn to ramble again! lol

Linda, Jamie didn't mind all of the stuff she had coming out of her right after surgery except the tube going down her nose and that was mostly the way they had it taped. Oh, I forgot to mention the heart monitor, but that isn't a scary thing and they usually have a clip type thing on their finger to monitor their oxygen (?), but those are the easy things. Jamie spent one night in the Intermediate Care (no need for ICU, yeah!) and the heart monitor and tube in her nose were removed the morning after surgery before going to a regular room.

Some say it takes days for the stomach to wake up after surgery and start making noise. Jamie's was making noise the night of surgery, but she still wasn't allowed to eat for several days, which from what I understand is a good idea. You don't want to push them into eating too soon, or they will just get sick.

Yes, she lost a few pounds, but only maybe 3-5 pounds so it wasn't too bad. I'm not sure if she's gained it back or not, but she doesn't and never did look sickly from the weight loss. Like Carmell said, the stools can be a real problem after surgery. They continue on the iron pills, plus they get pain meds which don't usually help the situation. Because Jamie's bowels hadn't moved we had to stay in the hospital an extra day until they did start working.

Was Jamie alert in the recovery room? Ha-here's the first thing she said to me in the recovery room-"your hairs a mess". Yes, she was awake enough to comment on my hair and after waiting so long, I really didn't care what my hair looked like, but as a teenager, I guess it mattered to her. I did mention to her as to whether or not she's seen her own hair lately and she said she didn't care about that 'cause she couldn't see it! Our conversations were brief. She slept off and on most of the time in recovery.

How soon after surgery did I see her? If I rememeber correctly, she was going to recovery around 5 p.m. and I saw her around 6 p.m. and we were headed to her room by about 7 p.m.

Mary Lou

nikyergen

04-07-2005, 05:01 PM

Linda,
As we all try to tell you our stories, try to keep in mind that each of our children, on all of these forums, had difference proceedures, some even have other health problems. No two surgeries are alike. Crystal was in recovery for about 30 minutes before they let us in to see her. She never went to ICU. They took her directly to her room, which is SOP at Shriners. Crystal had an IV in each hand, heart/oxygen monitor attached to her finger and a cathater when we saw her in recovery, and an oxygen mask laid next to her face for a little extra oxygen. The swelling Crystal had was not a shock to my husband and I, she still looked like our daughter, blonde hair and all. So, as you can see we all saw different things when our children came out of surgery. Antibiotics are routine proceedure with these surgeries. Crystal lost a few pounds, but by no means is a skinny girl. She is very fit and athletic. She's 5'7 1/4" and weighs about 130 lbs and is all muscle.

As far as taking blood, I don't know. They didn't take any from Crystal when we were in the holding room and they didn't take any after surgery. She didn't require any blood transfusions at all. They use a machine to clean the blood cells and return them to the patients body. Not sure exactly what it is or how it happens, but that is what they did with Crystal. As far as the bone graft for her back goes. They used bone from the bone bank instead of taking it from her hip or rib. Which is one reason she is recovering so quickly. She isn't recovering from two surgeries at once.

Crystal had posterior surgery only.

Crystal didn't eat for beans in the hospital. Partly, her stomach was upset from so much medication. The other reason is that she didn't like a lot of her choices. By the time they allowed her to eat real food, it was the weekend, and I think they served leftovers. I wouldn't of eaten them either. I finally asked her what she wanted to eat for dinner the last night. She said "PIZZA". So we ordered pizza, a bunch of us on the ward, and had a going home party that night. That was the real first thing she ate, other than two sandwiches a couple of days earlier.

As far as her classes go, she may be able to handle an internet class. The problem with a televised class is that she may not be feeling up to it right at the moment it is on. With an internet class, she could work on it until she couldn't deal with it and then rest for a while, then go back to it later. Crystal takes her medication around her study schedule and seems to be doing well. She actually sat at the computer today for 5 hours and worked on her science presentation that is due next week, and it is almost finished. I sure wish we had Power Point when I was in high school.

My big concern is that we are feeding you so much information that I am worried you will get wigged out (just a term we use at home). Keep in mind everyone's surgeries and experiences are different.

One girl made a statment that goes something like this - We survive this surgery, we come out whole and in a lot better condition than we went in. I thought that was a good one to pass on.

Love and prayers to you all as you go through this time of your life.

'til later,
Nikki

Carmell

04-08-2005, 10:39 AM

Great comments, Nikki. Each and every person who has scoliosis is unique, and requires unqiue and individualized care. Always remember that. What works for one may not be the right thing for another.

And yes, we've gone into lots of detail. Hopefully its being received with the intention it was sent - to serve as a an example of a few experiences. If you are like me, I'd rather know too much than be surprised by something I wasn't expecting. The fear-of-the-unknown is always harder for me to handle. I hope I haven't made anyone more stressed or worried - that wasn't my intention.

I wish Crystal would have had a good food option. Our hospital has "room service" for the patients. Anytime between 7am and 7pm they can order from the menu. Not bad at all. It's one of Braydon's favorite parts about being in the hospital (even tho he usually doesn't eat much). The pizza party sounds like a great idea! Good job. Good luck to Crystal with her science fair project. I hope she gets an excellent grade on it.

Tiny

04-08-2005, 10:49 AM

Hey, I love the ramblings! Keep them coming. I'm taking every little bit in. By reading through the other threads as well as this one, it seems that the one most important thing is the medication afterward. So as I understand, when and if she is on the morpine pump, she will most likely be in controlled pain, but it is when she goes to orals that I have to really keep on the nurses?
The bone they use for the fusion: Tara's Dr. said they will probably use from the bone bank so she won't have another scar, but I later read that it sometimes doesn't allow for as good of a fusion. Nikki I know you said they used the bone bank for Crystal. What led you and your Dr. to that decision, and any other experiences or thoughts on that?
Thanks,
Linda

nikyergen

04-08-2005, 11:17 AM

Linda,
The reason for using the bone bank is soley to keep from having the second surgery at the same time to recover from. Crystal's doctor does this as a routine, unless someone really objects. Her doctor is Dr. Krajbich at Shriners Hospital-Portland. He is one of the leading doctors in the world on spine surgeries and teaches procedures all over the world. A lot of times, the kids experience more pain with the bone grafts being removed from the hip or ribs than they do the pain from the actual scoli surgery. Some of the decisions that were made about Crystal's surgery was based soley on the knowledge the doctor gave us in our appointments. We absolutely trusted him, so the decision was an easy one for us. I hope that answered your question.

Pain management after surgery is the most important thing to recovery. The hardest day is going from the morphine pump to oral meds. But, if you pain management team is good, they will stay right on top of her pain. I don't think any of us can stress enough that you, as the parent, need to stay on top of them too. If you feel she is in pain, don't be affraid to check to see when her last pain meds where and if they can give her anything else for pain. Be assertive on this. There have been several mom's recently that have had some serious problems with pain management in the hospital and had some castrophies. So, stay on top of the pain meds. Keep track of when everything is given. The worst thing that can happen is to get behind the pain and have to play catch up, it can take a while to get caught up, or so it seems like forever to get caught up on the pain.

Hope I didn't overwhelm you.

Love and prayers.

'til later,
Nikki

lrmb

04-08-2005, 03:01 PM

Hi Nikki, Mary Lou, and everyone who has posted here...

Just wanted to say, I am also getting a lot out of your posts! When it comes time for surgery down the line I will have a lot more of an idea what to look out for. Don't worry about the detail! it is really helpful!

Thanks all.
Laura

lorrie

04-08-2005, 04:24 PM

Hi Olwyn
Great to hear from someone local. We are also under Mr Gibson at the Freeman and expecting surgery almost any minute - though still no date. I couldn't stand it any longer yesterday and phoned the hospital but all they could tell me was that Genevieve is top of the list and they're just waiting for Mr Gibson to give them a date. AAAAAArgh!
Notice you said you're pre-donating blood - was that their idea or yours? No-one has ever suggested it to us and I know it's a bit unusual over here?
Maybe bump into you at the Freeman sometime.

Lorrie

Alison

04-08-2005, 07:45 PM

This only appears in a few threads (you might have read it, might've not) ; but it's important, so I thought I'd bring it up again. One of the things you should get Tara to pack is some sanitary pads, that she "likes" and is comfortable with, and mention the fact that she may get her period sometime around the surgery to her. One of the "lovelies" of the female body, is that after major surgery, and with all the stress that it goes through for and during surgery, a period will often (not always but usually) be brought on. Even if you've just "had one" it can begin again, will usually occur just before surgery, or in the first few days after.

The nurses are used to it, and are great dealing with it.....but the sanitary pads they usually have in hospitals are the big, thick surfboard like ones. Which are very uncomfortable, and make you feel more miserable after surgery, and I think your a lot more "comfortable" with your own.

Alison

nikyergen

04-08-2005, 11:36 PM

Alison,
That was a great addition. I forgot about it. Crystal's started the day before we headed home. We were thankful that we had gotten some that she likes.

Laura,
I am so glad that we are all able to share our experiences with each other. We all lean on each other pretty hard. But to discuss this with you friends around the house, they just don't understand where you are coming from. Keep us posted on your guys/gals surgery date.

Love and prayers to all.

'til later,
Nikki

Tiny

04-09-2005, 08:33 AM

Hi, I actually did see something about this posted a time or two and when I mentioned it to Tara, she wasn't too excited about this possibility so we have an appointment to see the gynocologist and get her on the pill before surgery. She started her periods late (16 1/2) and she's never gotten regular and the Dr.s have suggested it for a while now, so she wanted to go ahead and do it so she could avoid her period for the surgery.
Thanks for the information, I appreciate all.
Linda

Alison

04-09-2005, 07:39 PM

Umm Hi :-)

Just something to defianetly look into in regards to before Tara goes on the Contraceptive Pill before the surgery, is whether her Scoliosis Doctor or the Anaestheist Objects. Why I mention this is, whilst the pill is a very good idea, many Doctors/Anaesthetists object to a person being on the Contraceptive Pill, whilst they're undergoing "long surgery" (and with the immobility for the first few days after) /and/or require that it's stopped 6 weeks before the surgery.

All the risks associated with the pill increases whilst you are undertaking bed rest/ and or under anasthesisa including stroke, blood clots etc. Its often (then again still depends on the Doctor) "ok" in shorter surgery, and where you're up the same day, not on the table for as long etc; but something worth enquiring about to the Scoli Doc/ Anaestheist to see if its ok

Regards

Alison

Tiny

04-10-2005, 06:41 AM

Alison, thanks so much for you input. I never even thought about the risks associated with the pill being a problem. I will definitely call the Dr. Monday morning and check this out. Thanks.
Linda

Carmell

04-11-2005, 10:42 AM

Another thought about periods and surgery and not taking the pill, etc. would be to ask about a NuvaRing. My daughter (almost 19) began her periods at 13-1/2, and I started at 15-1/2. I was NEVER regular on my own, but with the pill or NuvaRing I am. The NuvaRing would not interfere with anesthesia or medications, nor does it put you at a higher risk of blood clots like the potential side effects of the pill. Have Tara ask her GYN about this option.

Tiny

04-11-2005, 12:12 PM

Thanks Carmell, I will. She comes in Friday for her appointment, so I'll have her check out that as an option. I'm still waiting to hear back from the Dr.s office as to his feelings about being on the pill.
Linda

Tiny

04-14-2005, 06:23 PM

OK I finally heard back from the Dr.s office about Tara being on the pill. He said it was perfectly fine, and that there would not be added risk, so that was a relief. She'll go tomorrow, but she'll tell the gynocologist that she will be having surgery to get her opinion on that as well. They also prescribed something to help with the constipation. I can't remember what it's called but when I pick it up I'll post it. Your body doesn't become dependent on it the way it does with a laxative. This just moves more water into your bowels. So we'll see how that works.
Linda

susannajon

04-14-2005, 09:10 PM

Hi Linda,

I'm very late jumping in here... I've been on a business trip and am just getting back. You've gotten some great advice from the other moms. This forum was my lifeline leading up to surgery. I'll throw my two cents in for whatever it's worth.

Don't be surprised if she gets breakthrough bleeding even if on the pill. Surgery really knocks us girls for a loop. Bring tampax or pads, whatever her preference just in case.

As far as other stuff to bring:
I-pod or portable music device
Laptop or portable DVD player
A couple of photos of friends and family
Comfort object like a childhood bear (you're never too old!)
Soft familiar pillows
Slipper socks (the fuzzy ones with sticky bumps on the bottom, try Target, Walmart)
Plastic cup with a lid and straw
Rinse free soap like Cetaphil. The soap the hospital has can be nasty.
Body lotion
Face care stuff (wipes, lotion, zit cream)
Tootbrush and her favorite toothpaste

If her hair is long, put it in two braids (like Pippy Longstocking) and brush it out every day when PT makes her sit up. Bring covered bands to fasten the braids. If her hair is short, consider trimming it even shorter to minimize the birds nest.

Keep that journal! It helps you remember when she gets pain meds and the names of doctors and nurses. If your daughter starts to wimper or feel anything other than mild discomfort (3-4 out of 10) insist on paging the pain management team, day or night. Even if she's on the pump, they can come and give her a little extra zap. There is always a way to make them comfortable, so don't take "No" for answer. Pain slows healing and there is no reason for her to suffer.

Try your best to sleep before surgery, although it is really tough. Make sure she stops the iron a day or two before surgery and has light meals the last day so she's not backed up.

OK... I'm done rambling! Let me know if you want any suggestions for preparing for her homecoming.

Hugs to you and your daughter!

Tiny

04-15-2005, 06:46 AM

Susanna,
Thanks for all of the tips. I was actually wondering about break through bleeding. I have Tara asking about this at her appointment today. I will make sure she goes into the hospital prepared. She gets cramps from her period so I was hoping if we could avoid it for a few weeks, it would be one less pain to think about.
I'm copying your list. Great advice. And as far as a comfort object, you're right, they are never too old. She still has a strip of a blanket that she actually took with her to college! I'll make sure she doesn't forget to take that with her to the hospital.
I've jotted stuff down about homecoming that I've seen here, but if you don't mind repeating some of the important things that were high on the list that would be great.
Thanks for all of the help, and continued prayers in your daughter's recovery.
Linda

susannajon

04-15-2005, 08:17 AM

Hi Linda,

Homecoming stuff that's important:

A raised toilet seat with arms so she can get herself up off the potty by herself. VERY important for her self esteem.

A chair for the shower, because it's hard for them to stand for long periods in the beginning, and the meds and heat can make them dizzy.

A comfy chair. Some people like a straight rocker with pillows. Many prefer a recliner. I got a LaFuma recliner, which is meant as a deck chair. It is small and light, and easy to move, not to mention you can get them on line for about $150. We put a couple of pillows in it, and my daughter lives in it right now.

A memory foam bed topper, at least three inches thick.

One or two body pillows. They are easier to position than a bunch of bed pillows, and they make the kids feel safe and supported.

A grabber so she can get things off the floor, or pull up a sock

Lots of DVD's (we belong to Netflix which was great because I didn't have to leave the house to get movies)

You might want to rent a hospital style table for a month or so.

Walkie Talkies or a baby monitor so she can "page" you without screaming. Our portable phones have a pager feature, so we used them instead.

Really soft PJ's, preferably made from knit jersey, with a tank or t-shirt top, and loose tie bottoms.

That's all I can think of for now.

Susanna

Tiny

04-16-2005, 09:22 AM

Thanks Susanna, great advice! As far as the body pillow, I've seen that mentioned before, is that something you take to the hospital or just have it for home?
Tara also had her gynocology appointment yesterday. It certainly is good to have those second opinions. Her dr. told her no way she wanted her on the pill when she would be that immobilized for a week or so. So it looks like she will have to suffer through her period like the rest of the girls. So at least she knows what to expect and to be prepared.
Linda

nikyergen

04-16-2005, 07:12 PM

Linda,
We took Crystal's body pillow to the hospital with us. It was certainly handy to have. As the time came that I was able to turn her in her bed and it was so nice to only have to deal with one pillow. The nurses really liked it too.

I am so glad you checked with the doctor's on the pill. I didn't have a clue what the answer would be. But, now we know. Crystal didn't start her period until the day we came home. So, I am hoping for the same for Tara.

'til later,
Nikki

guacamoleoly

04-16-2005, 09:01 PM

Hiii, I know I'm not a parent but I'm a kid who had two very supportive parents to help me through my surgery so I can give you a few pointers if you'd like *g*.

Basically, I was just a really big emotional mess after my surgery. I was going through a lot of stress because I was in a lot of pain and all of that. Basically, just be sure that you're there to support her. I wouldn't really allow people to come by and visit for at least the first week. When people came to visit me, I was okay for about 10 minutes and then it all became too much for me to handle and my parents had to ask them to leave. Be sure that she has some means to get to you, even in the middle of the night. My dad slept on the couch in a room adjacent to mine with the door open. I had a little bell and would ring it whenever I needed him and he'd come running hehe. Muscle spasms and nerves reconnecting might give her some trouble, I had a lot of trouble sleeping the first few nights after surgery because I couldn't find a comfortable position. One thing that really helped me -- my parents got me an actual hospital bed for the first two or three weeks after surgery. That way I didn't have to climb the stairs in our house to get to my bed at night. That helped a LOT.

I think everyone here has pretty much covered everything else. You seem like an awesome mom already, coming here and finding out all this stuff, so I'm sure you'll have no problems being supportive :). Good luck to your daughter!