Pre-op results

[Littleone1016]

Rita-
I am 24 years old now. My last back surgery was the rods were taken out I was 13 or 14. They fused a few more vertabrae up after the rods were taken out so I am now fused from T-12 to T-2. Apparently the bars were in there long enough for the bone to fuse well so I am happy to report that in those areas I have had no further curve. Unfortunally I also have Kyphosis so they are slightly concerned that in time the spine will curve from the fusion up toward my neck, causing me to have problems keeping my neck and head up straight. They told me that the problems isn't bad enough to worry about now but that they were going to keep an eye on it to make sure.
Also, if it makes you feel any better about you having to prove your daughter's doctor wrong, my mom did the same thing. My doctor was one of the best pediatric orthopedic scoliosis doctors in my area (san diego california) but he had NO bedside mannor at all. We were lucky if he would explain much of anything to myself or my parents. He spoke like i was not even in the room and used me for guinea pig for all his interns to learn about my operation. One day he actually spent more than 5 mins with us explaining something and my mom grabed his hand before he left and gave him a heartfelt thanks (much of it sarcastic) for spending the time to make sure we understood what was going on. He did not like my mom, she was very opinionated and wanted to know and learn as much as possible. He didn't have time for it. BUT, from that day on he actually used my name when refering to me and always spent at least 15 mins with when we saw him. It pays sometimes to be in a doctor's face, and not just take what he says like it's carved in stone. Plus I know how much my parents cared and they wanted me to understand as much as i could about what was wrong with me and what needed to be done.

[Mary Lou]

Melinda,

This is so weird--13, 8th grade and Jamie plays the flute as well! Tell your daughter you won't be allowed to "sit and watch her and wait for her to wake up." We were called at 5:00 p.m. and told Jamie was going to recovery and it was 6:00 p.m. until I could see her. She was so wide awake! Also, tell her for the first few days she won't care about privacy in the bathroom or anywhere else! lol Tell her Jamie's pain was well managed. You have to help her with this. If you think she is in pain, speak up! Keep track of what medications they give her and what time. Encourage her to use the pain pump which should give her Morphine and keep her comfortable. As for the fire drills, it was one of those stupid things I thought about for some reason and also discussed it with two other moms here whose daughters returned to school the same day as Jamie and they hadn't thought about it either. That's what we are here for--to help and encourage one another and to get as much info. as we can.

Take care. I have to run for now. Rita, I will respond to you later.

Mary Lou

[Mary Lou]

Rita,

I think you will be very pleased with Dr. Betz. Jamie was seen by Dr. Betz in July 2004. I would have left him do Jamie's surgery in a heart beat. Everyone at Shriner's was wonderful to all of us. We personally went to Shriner's to be seen by Dr. Betz. However, his surgery schedule is crazy and we were told it could be up to a year before we could get into his surgery schedule and Jamie didn't want to wait that long. She wanted all of this behind her before entering high school. I've heard his associate, Dr. D'Andrea is wonderful as well. Jamie is seen by Dr. Lee Segal at Hershey. We've seen three of the doctors at Hershey. First two we weren't happy with at all. Dr. Segal, however is wonderful! Feel free to e-mail me if you want details. I am disappointed to hear of your problems with DuPont Clinic. That is where our family doctor recommended going if we weren't happy in Hershey.

Mary Lou

[rita]

reply to ac13

To AC13's mom.

Sorry if I got that wrong, name wise. Anyway hopital has a shared bathroom unless you get a private room. The first couple of days it is a bed pan anyway but they close the curtain. Also they did not let us in the recovery area until she did wake up. Just a thought. I did stay with her until they wheeled her into the operating room. When she comes out of surgery they will want you there. They are in pain and just to let you know if you did not, there face is very puffy. This is normal so don't get scared. Also a nurse is with them regulating their pain medication. My daughter did not even remember most of the time spent in the recovery rooom so you daughter will not know you are there anyway or atleast remember it if she is like my daughter. They will want you there, for just at least to whine a bit to you. They have every right to whine in that kind of pain. If you are staying in the hospital with her, you will get woken up many times since the pain medications after you are off the iv are given to them not so fast since they are usually busy at night. Any questions ask.
Rita

[pat]

pain meds

I'm repeating what Mary Lou said about keeping track of her pain meds in the hospital BECAUSE, one time they sent us down to x-rays, and her pain meds were due within the hour, and we barely got back in time, but couldn't find the nurse, and for that one hour (off the iv pump at that point), we waited for the oral meds to arrive and then for them to "kick in," it was awful; the worst pain she had. It should have never happened (and it won't with you), you just have to keep track of the next time the pain meds are due, and hunt down the nurse if you need to! Really! Pat

[rita]

reply to littleone1016

Littleone1016,

Thanks for the info. I emailed another forum person who is now 24 and she had a staph infection and they actually did not take her rods out. This is three I have seen so far. One was on antibiotics for a year. The other never said but this lady today told me she was reoperated on but the rods were not taken out. I have to email her back to find out that reason. I really think that it just depends on the doctor, knowledge, the doctors schedule or sometimes I think that the hospital or doctor just wants to make more money. Did they try anything to rid you of your infection at all? I do not necessarily like taking lots of medications but a year on antibiotics is better than another major surgery. The other lady also said to me that her mother worked for lawyers and they did not seem to think that the hospital could be sued since it is hard to prove if it was actually their fault. I can understand the infection but not the treatment. Then to be told she did not curve. As I said before, I can't wait for that measurement to be done on her xray. I truly think we were lied to when we asked if she curved so we would not think about coming back to him. Because of this infection, I think this doctor actually came and spent more time with us a couple of the days and even gave us a private room that was used for contagious patients. At first we thought my daughter got this room because a doctor from Infectious Disease came to see her a couple of times. We were actually scared. What the heck did she have that was contagious. We soon found out that they do this for any type of infections, the infectious disease doctor. The private room was to more or less say he is sorry he gave my daughter an infection and sorry she had to have another operation. A private room was cool but rather have an apology. Well now that it is a third one, and he will not be her doctor again, I plan on writing him to say how unhappy I am. I heard you can report doctors to some board. I doubt that I can get my daughter any compensation legally but just to let that doctor know what he did to my daughter could have been avoided or at least let him know he was very wrong. I have written many a letter being dissatisfied with products and such and one more letter will not be a problem for me. I need to center on my daughter and not worry about this for now. We are anxious to see if she is approved at Shriners. I hope to know in a week. As for the school, well she has been through it twice now and she has had no problems with kids or teachers or getting books. They let her leave class early and someone is assigned to carry her books and even get to take the elevator. She had her own key to it. Since she did not think she could sit in those hard chairs, the teachers found cushion chairs for her in all but one class. She had to sit at a table but she was fine with that. She also just brought her note in from the doctor about the books, chair and class dismissal time. The teachers all felt bad for her but they should and this worked out for many reasons. It is a shame you had to endure those bad kids. As for any facts like the medieval stretching would be nice if you sent it to me. Send it from here in an email. No need to post it here if you don't want to. She may need it. My daughter said she never had anyone make fun of her. But it would not hurt to be prepared in case. I thought they used those strecthing things for making you taller. I had not clue it was used for curves also. Interesting. Thanks.
Rita

[AC13]

Thanks

Thanks to all of you - you are my lifeline!!!
These are things I haven't even thought of, the only time (thank God) we've been in the hospital is with her and her sibs births. By the way, AC was born 1 mo. premature - anybody else have that happen - I always wondered if maybe that had something to do with scoliosis. Doctors didn't think so, but...? Okay, it sounds like we won't be there when she wakes up - too bad. That is a worry of mine - that she won't be taken care of if I'm not right there. (Am I being overprotective?) Will she have a catheter? She'll be on her tummy for a while right? And how long on pump? I want to ask the doctor if he can start IV after she is out - some will do that right? She goes for blood draws next Tuesday and the Tuesday after and then the Tuesday after that is her pre-op and the Tuesday after that surgery. Looks like we meet with teachers, principal and nurse on 2/3. What a schedule!
Thanks again!
Melinda

[rita]

AC13 Don't stop being overprotective

AC13,

You are welcome. I wish I had this forum the first time around. When I had my daughter, my water broke and she did not even give me any pain. They even gave me drugs to induce labor but it did not do the trick. A few cramps is all I felt. They had to take her C-section. She was on time also. Scoliosis can be heriditary. Don't you ever stop being overprotective. She is your blood and if someone feels that way, shame on them. We all want the best for our children. Actually come to think about it, they start waking up in the operating room. Then they are moved into recovery and are somewhat awake. The pain drugs make you sleep on and off. You will see her as soon as they get her into recovery. You can tell if she needs more pain meds. If you feel she is too uncomfortable they will just call the doctor and ask if they can up the dosage. I asked since my daughter looked far too uncomfortable. Another poster said to remember when the meds are given, iv or pills, I wrote them down. You are tired and will forget them. Believe it or not, my daughter remembered exactly what time she took everything, even when she was half asleep. Yes, she will have a catheter but I think for just two days. That depends on how clear it is, if I remember correctly. Actually she will not be on her tummy. My daughter was on her back first thing. They pack that incision so good you would think there was a river flowing down it. Both surgeries were different on the pump for my daughter. The first was more but she knew the meds made her sick to her stomach and she wanted to get off them as soon as she could. This will depend on your daughter. (I guess she did not want to throw up in her Aunts hands again. That was embarrasing) You have no choice for the IV. This she will get anyway. Blood draws - just a suggestion. My daughter and I went to Red Lobster after one and she got sick after lunch. It may have been the blood draw or just the food. Just not sure. Have a big ziploc in the car with you just in case. The other blood draws went fine though. Since it was the first she may have just worked herself up about it. Just not sure why. As for you being so busy, it will be a blessing in disguise. Less to think about and less time to worry also. Good luck.
Rita

[Mary Lou]

Melinda,

Don't worry too much about the IV. The resident who tried to start Jamie's numbed her hand first (maybe you can ask for this) and said he would make one attempt. He failed. They actually started her's in the O.R. while awake, but only after asking her if she would prefer they try again or give her a gas mask. Is your daughter taking iron pills? If not, she will need to start taking them a.s.a.p. because she will need her iron count up in order to draw blood. Jamie was given iron pills in the hospital and continued for awhile at home.

Keep what Pat and I have said about pain meds in mind. The pain control is very important. We were told to expect Jamie to be in the hospital for about one week after surgery. She left the hospital two days before that. You will be amazed at how well most children do. As for infection, they started Jamie on antibiotic through her IV in the O.R. and continued them for two days afterwards. Rita, did you daughter receive antibiotics pre-op?

Jamie just started playing her flute recently. We joke with her and tell her she is going to get all the flute players in band in trouble for their bad posture.

Hi Pat! I hope things are still going well for you. Jamie is six weeks post-op now (wow, how time flies) and doing well.

Mary Lou

[rita]

Mary Lou,

She did not get antibiotics prior to the day of surgery. I think I do recall that she did get them during the operation by IV. I think that is too late. Not sure who it was on this forum that said they got them a week or so before. I will definetly ask for this from the surgeon. I don't want to take anymore chances. My daughter had to take the iron also before her blood donations.
Rita

[pat]

on tummy!

Hi Melinda!
Your daughter will not be on her tummy after surgery for a long long time (weeks/months); I thought the same as you, that she'd be on her stomach, but no!

Hi Mary Lou! All is well here; funny, they do have beautiful posture our girls, don't they!? My Jamie's tall too! Almost my height (I'm 5'8", and she's closing the gap now!) Your Jamie's doing well, yes?! Can't wait to hear how your next post-op appt. goes.
pat

[celestin1170]

Hello everybody..sorry it takes me so long to respond on here. I don't get on here much these days.

Melinda:
Keri wasn't able to donate her own blood because she doesn't weigh enough. The Red Cross wouldn't allow it. We are going to go with the blood bank instead. It's very expensive to find a donor! If we wanted to go with a family member then it was going to cost us $65 for each person they had to test to find a match! And our insurance didn't cover any of that. At least the blood bank is free.
Everyone is right. The waiting is the worst part I think. We are coming down to the wire now and i'm getting more nervous by the day. Keri seems to be ok..she doesn't even talk about it. We have alot of family that is going to be there with us that day so they will at least be able to try to help me keep my sanity!

Mary Lou:
We have been in contact with the school since we found out that she would need to have surgery. They have already found a tutor for her and she will be all set when she comes home. We have to contact the school when she's home and then they'll set up a schedule for him to come. All her friends are excited for the tutor to come...he's a really cute teacher at school and they all drool over him...LOL Teenagers

I will keep in contact with you through the next few days, and i'll let everyone know how we did as soon as I can after her surgery.

Kim
Keri's mom