What is surgery like?!

[mamakay]

Hi Jennifer,
I don't know if she will have another MRI or not. Ste also had hers in the very beginning when diagnosed.(June 2004).
It took aout 2 hrs max.Is that how long Nichole's mri was?
I wish I knew what pre-test things will be needed. I don't think we will know untill our visit 2 wks before surgery and all I know is that is when they will expect blood.
What if we are not the right type?
What kind of X-rays?
How do I know what anesthesologist to choose?(I have to pick from a list!!)
etc..etc...
Seems like alot to figure out in one day.
My head is starting to spin with all this happening now.
So I have a call in now about all our blood types. What have you decided on that subject?
Also I know my baby gets upset about the surgery too but I told her she will have so many presents to open it will seem like Chrismas.
My motherinlaw gave us the idea and is also giving her a present for everyday she's there to open.
Maybe that will help Nichole feel better about it if you want to try that.
Yes those elevators look and at our school probably are 100 yrs old!Plus they are gross from all the construction and guys that use them for that.... She'll probably take the stairs and not tell me.
I guessI better call the school and get the ball rolling from what you said they need to know now.
Thanks for writting,Kay

[Bill's mom]

Mamakay,

I thought I just posted something to you but have no idea what happened to it, so I will try again. (My apologies if this ends up being a duplicate post.)

My son is 15, was diagnosed in June, and is also scheduled for surgery on Nov. 3rd. And we have to be at the hospital at 5:30 a.m.!

He is having his surgery in San Antonio. I was wondering why you decided to go to the Medical Center instead of staying in Austin.

Susan

[mumof5]

The week before Amber was ready to go back to school I went to see her year advisor and deputy principle of the school. They suggested that Amber leve class a few minutes early each lesson and / or she could arrive a little late so that she would not be in the hall ways when they were crowded. They also gave her an elevator pass and made a special exemption for her to have a locker. I think as long as you keep them informed they will do their best to help make thing easier and safer.
Amber came home from hospital in a patient transport ambulance, which was good because she got to lay down for the whole trip.
It seems like you have so much to do but you will be suprised how smoothly and quickly it will all go. There are a lot of people around waiting to help, you just have to ask.
Best wishes.
Cheryl.

[mamakay]

Hi Susan,
My motherinlaw lives(my husband is from there also) in Houston and asked her Dr for a name since we were trying to get more than one opinion.
At first we went to a pediatric ortho here, then to another Dr in the same practice.
Then the other group of Dr's in this town that we have heard high marks of does not take our ins. So as a result of getting one more opinion outside practice here,we found this Dr in Houston and felt his practice deals with more cases on a monthly bases.
Does that make sense? I'm sure the surgeons we talked to here would do a good job but it 's not that far to Houston from here and I was impressed by all the medical world there. Also he did not expect to have her in icu either, his practice was inherited from the Dr who invented the Harringtonrod.
It's hard to know if we've picked the right Dr for our child's life .
I would still like to go to Dr Kurt von Ruden as many people have and Dr's have told me he is a very good surgeon, but again the ins thing.
We considered S.A. bc I'm sure they have a big medical area there too but had no name to go on. I guess we could go on more "opinions but I don't see any reason to keep stressing my child out if we've made a surgery date.Besides they are at a point where the x-rays are not up to date enough and also want to do more of those, which I find uneasy to keep subjecting her to.
So long storey but that's about it.
How did you decide on your surgeon? I read there are somethere from the srs site.
Did you know Carmell flew there from a long way for her son's surgery too! I think he was an infant and the Dr may have retired now.
What is the degree of your son's curve?
Is he in high school?
Are you having any ribs removed?
What does he feel about all this and is he in any sports?
You are the 3rd person to say your childs surgery is on Nov 3rd also!! We must stick together here!!

Write when you can..Kay

[Bill's mom]

Hi Kay,

Everything you said makes sense. I just was curious about the travel. We live in New Braunfels and it seems we are going to San Antonio on a regular basis (additional x-rays, his MRI, follow-up appointments, a pulmonologist, etc.) I’m grateful to not be driving to Houston on a regular basis. (We used to live there.)

We were referred to our doctor by our pediatrician. He seems very competent and confident. I do question whether anyone ever feels 100% comfortable with a decision like this, but for the most part we are at peace with the surgery with this doctor.

Yes my son is in high school – 10th grade. He’s a very bright boy but a horrible student so I think he’s looking forward to the time off from school. Last night was open house at the high school and I spoke with each of his teachers about his upcoming surgery. They were all very supportive. Additionally, at the time of his diagnosis, I emailed his academic advisor and she told me that he will be eligible for a home study program that will send someone to our house four hours a week. The week of surgery I’m sure he’ll be too out of it, but after that I’m sure he’ll think this tutor stuff is the way to go. His doctor told us he’d be ready to go back after Thanksgiving. I don’t really believe that, but it’s encouraging.

Early on, Bill said he’d rather live with this than have the surgery but he’s going along with our decision. He seems OK with the whole thing although I think he just doesn’t think about it. (How he can do that is amazing to me.)

He has an S curve with one curve at 53 degrees and one at 28 degrees. He will not need to have any ribs removed. We’re still debating what bone to use for the fusion. The doctor has left that decision up to us. More and more I think that we’ll go with cadaver bone since his fusion will be long – T3 to L3. We are planning to have him donate at least one pint of blood. I work with someone whose daughter had this surgery in June and he said that their doctor felt it reduced the risk of any additional infection if their blood is used. How he does after the first donation (needles really freak him out) will determine if we try to get him to donate more.

He was diagnosed with asthma several years ago and hardly ever has problems with it, but because of the condition we went to a pulmonologist a few weeks ago to make sure his lungs were OK for surgery. We were amazed to learn that his scoliosis is affecting his lungs. One lung is smaller and the other is compensating. What a shocker. That definitely confirmed that we need to proceed with the surgery as planned.

So that’s where we are. (Pretty long answer!) Our next appointment with the pulmonologist and the surgeon is on 10/4. And, like most people on this board, we continue to pray for a miracle.

Keep in touch. (I haven’t posted very often, but I monitor pretty much daily.)

Susan

[jc3]

i can't believe there are three of us whose children are having surgery the same day. I know this is great support for me. Thank you all so much. I can't imagine not being able to share and ask questions. I talk to friends about it, but i don't think anybody really understands how big of a surgery this really is.
susan, i understand you contemplating which bone to use for the graft. In one sense you probably want to use his own, just because it is his own but also i understand it is one less pain he will have to go through. They say the graft is painful. I can't believe that the scoliosis is affecting his lungs. My daughter has a large rib hump, which means her ribs are rotating. I am curious to find out if it is effecting her lungs. I will find out i guess when she has her pretest at the pulmonologist on Oct. 11th.
cheryl,
how were you able to get amber to come home in the ambulance? That may be something to look into.
kay,
i don't think nicoles mri took that long, but it was quite a while. It was about 2 years ago, but they said they need a new one before the surgery. I thought since she already had one we wouldn't need a new one. They scheduled all her pretest appointments for me all in one day, which is the ekg, echocardiagram, mri, pulmonary function and one other one, which i forget. I would ask the dr. which anesthesologist they recommend, instead of just choosing one off the list. i think with the blood if my husband or i could donate we will do it for her, but i'm not sure yet. I will let you know what we do on that. My head is also starting to spin. That is a good idea with the presents i know my nicole would love that.
did you call the school yet? Don't forget to do that.
susan,
That makes me feel alittle better that your dr. thinks he may be ready to go back to school after thanksgiving. That is a big worry of mine, i just want her not to have a long recovery.
I wish this was all over already and it was next summer already.
thanks everyone
jennifer sorry this is so long

[mumof5]

Everyone recovers at their own rate. I know you 3 are going to 'compare notes' the whole way, but just remember that different length fusions and different people will heal differently. There are a lot of things that will determine how quickly they heal and it's not just the physical healing there is also the mental aspect.
In Australia we have ambulances that are mainly for taking patients from one hospital to another. When we saw the doctor that did Amber's surgery I said to him that we would be dropped off at the hospital and we would be left there with no transport. My car is a little sick (has been for months) and wouldn't make it that far, so my dad planned on taking us down there. I said to the doctor that if we couldn't get someone to come and pick us up we would have to use public transport to get home. That meant a bus from the hospital to the train station. A train into a different part of Sydney to get on the right line. The a train into Newcastle, then a bus home. All up taking about 9 or 10 hours. He just looked at me and said she can't do that we'll organise something.
They use the patient transport a lot for older people with no transport to get to and from hospital for tests etc, so I knew that they could be used for getting people home. I wasn't sure if we would qualify or that they would go that far. The only way to find out is to ask. I mean they can only say no.
A lot of doctors have a 'team' that they like to work with. I think it is best to ask the surgeon which anaesthestist they like to use.
Best wishes.
Cheryl.

[acl_04]

Well, for me, the worst part was either... Being in ICU or not being able to drink for the first couple of days. I stayed in ICU longer than I was supposed to (4 days) and I didn't like it because it didn't give me a lot of privacy and it was sort of stuffy and loud. My mouth was SO dry those first couple of days when I wasn't allowed to drink. My dad would say: "Oh, well, I'm gonna go and get a SODA." and I'm growling at him, because at that time I would kill for a soda. After ICU, I got to move up to the rooms with only 2 people in it. First there was this quiet girl... Then she moved and then my roomate was a cute 3-year-old Hispanic girl who was in a lot of pain during the nights (Ah, the nights, they took my vitals every 2 hours, which was kind of annoying, and they asked me on a scale of one to ten, what was my pain level). I didn't like turning either. It hurt a lot. AND, since my bowls didn't work, I felt really bloated and my stomach was so round! As I got weened of the morphine (which I got to press a button for!!) I started taking medicine by mouth. Then, the physical therapist (who was WAY too happy) came. First I sat up in bed. Sat on the side of the bed. Stood up. Walked a couple of steps (using walker). Walked to bathroom and back. Walked to chair. Walked up and down the halls. And finally, walking up the stairs. I accomplished all that, and after a week in the hospital, I got to go home!!!! I started wearing a brace 23 hours a day. I just kept laying down the entire day, reading, watching TV... Some of the nights I woke up, but now, I still wear the brace (my surgery was the 25 of August), I'm still not allowed to go to school (October 11, they said), but I'm doing my homework! Since I had two high-degree curved, when they were straighten, I was 1 and a half inches taller!!!!! I was so happy! Then, I noticed that the shoulder blade that used to stick out didn't stick out anymore, and my butt didn't stick out, and now that I'm taller, I actually look thinner!!! I keep thinking, even though I can't DO anything like sports or PE, this is all going to pay off (In a way, it already has). So I hope you weren't nervous, because it's ALL worth it.

[janneboud]

I have a question also. how do you go to the washroom? it it in a bag, or in the washroom??? Just trying to find out what I can.

[xLinda]

During the surgery, after you've fallen "asleep" you should have had a foley catheter put in (I think that's what it's called). This is put right into your bladder, so you won't have to get up to go pee. As for number 2, you probably won't be going for the first couple of days seeing as you're system is still waking up. By the time you do need to go, you should already be up and walking and the catheter would most likely be out by then so you'll probably be able to go to the washroom...but it'll be a bit hard =/

[janneboud]

thank you xLinda