New with lots of questions

[Snoopy]

Laurie,

I know it sounds amazing, but yes, they are usually up and sitting in a chair within 24 hours after surgery. Jamie had her surgery on a Tuesday, Wednesday she was sitting in a chair and went for her first walk, Thursday went to P.T., Friday went to P.T. and walked up and down the stairs, and we were told she could go home Saturday. She didn't go home until Sunday, for two reasons: 1) a nurse messed up with her pain meds Friday night and I wasn't sure her pain was properly controlled and 2) her bowels hadn't moved and they wanted that to happen before she left. So, as you can see, your doctor's plan is unrealistic. Remember, you always have the right to request another day in the hospital if you think your son needs it.

Mary Lou

[LeaEvelyn]

Hi Laurie,
I'm glad I could help. I have a sister Lori, and I noticed scoliosis in her middle child just three months ago. I referred her to my son's doctor and they really liked him. Shane was up and walking 24 hours after surgery. It wasn't the walking that he found hard, for they didn't have him go very far. What he found hard, was they wanted him sitting up in a chair for one hour, twice a day, which to him, seemed like an eternity. He was way more comfortable laying down. It actually took him about four to six weeks to get used to the rods in his back. The doctor said it was because his body was so used to being curved, that it was trying to adjust to being so straight. I hope your son does get a chance to read Shane's story, this way he will also realize he isn't the only boy suffering from this condition. If you have any questions or concerns, I'll try to help you in any way I can, ok. Remember, Shane is our only child too, I don't know if that makes much difference or not, but I also took everything pretty hard. Also, Shane's first surgery was on a Tuesday, he got to go home on Sunday. His second surgery was on a Monday, we went home on Friday for that one. But remember everyone is different.
Take Care,
LeaEvelyn

[lnetzer]

Thanks for the support!

LeaEvelyn:

Thank you for sharing your story with me. When I posted I hadn't read it yet as I wanted to go thru it first and then see if Josh wanted to read it. He did and wanted to see more stories. I know any parent worries about their child, but when you only have one I think it makes it all the more worrisome, at least for me! I am trying to fill my head with any and all knowledge I can regarding the surgery. My husband doesn't have alot of time to just sit and read so I make notes and share with him, too.

The doctor told us that Josh will gain about 3 inches from being straightened, so he will be almost as tall as I am! I keep trying to focus on the positives in all of this, knowing that there are so many who have gone thru this and came out just fine! Easier said than done

Already he is saying he just wants to have the surgery done and over with, and I agree that the anticipation of it all is getting to me as well. I think once the blood donation starts next month it will be even more real to all of us. He is talking about this person and that person coming to visit him, etc. We haven't spoken to the doctor yet, but I'm sure they're not going to let everyone come traipsing thru the hospital room constantly! What would you recommend? I know my husband and I plan to be there almost the entire time, but for the most part, I don't know how things will be regarding being on pain meds, etc. and will he even be coherent enough to know he has visitors? I would think he needs to rest more than anything, and the sitting and walking he'll need to do.

I do appreciate any input you have. Thank you again!

Laurie

[Snoopy]

For the first few days, we kept visitors to a minimum. Shoot, Jamie doesn't even remember some of them being there! As for her friends, we asked that they call instead of visiting in the hospital. We made arrangements before her surgery to call her best friend and let her know when she was up for a visit and that worked very well. So, except for my husband, other daughter, my mom and dad visiting every day, (I stayed the whole time) she had very few people in and out. It gave her a chance to rest whenever she wanted to rest.

Mary Lou

[nikyergen]

Ditto with Mary Lou. They are on enough pain meds., etc., that they don't really realize they have someone visiting. Crystal remembers very little of her hospital stay. She remembers the last two days, but anything before that is a pretty big blurr to her.

Nikki

[flowerpower]

We opted to not have any visitors while my son was in the hospital. He had a bit of a hard time dealing with the pain (low pain tolerance) and with the meds he was on he was not very alert or coherent for the first few days. Plus, he didn't really want his friends and family to see him with the drain and NG tube and such. He had to keep the NG tube and catheter a day or two longer than most because the morphine really slowed his system down. One uncle paid a surprise visit right at the time we got Joe up to sit in a wheelchair for the first time. Not very pleasant, I really wish he would have called first. However, if your son feels up for visitors it will probably do his spirits well. I would just suggest to have them call ahead first. Good luck to you-

Renee

[LeaEvelyn]

Hi Laurie,
I'm pretty well in agreement with the responses you have gotten so far. With Shane's first surgery, he had his grandparents in the first couple of days. He was in intensive care, and he was on a morphine drip, he don't remember them being there. After that, his favorite cousin came in to visit. They had made big plans before surgery, to play X-box. Well, that didn't work out too well, for he couldn't tolerate sitting up for over a 1/2 hour, and he had to walk to get to the game room too. I guess I'm saying, it wore him out totally, so much so, that he slept for hours afterward. But if it gives your son something to look forward to, with the hospital stay, I can't say it would hurt to make plans, you can always call his friends if he don't feel up to visitors.
Well take care,
LeaEvelyn

[klein5]

I think that the Schroth method is a good alternative to consider before surgery. While the Schroth Method may not be a part of main stream scoliosis treatment in the US, that does not necessarily mean that it doesn't work. I am 18 but and it has helped me and I have seen it help adults as well. Some people will say that it is useless and can't be backed up about studies I believe they are being quite close minded. While my scoliosis was only about 30 degrees I was terrified when the doctor told me I might have to have surgery one day. If you are a candidate for surgery you should seriously look into and consider the Schroth method. This physical therapy is designed to help control the curvature, decrease body deformities, and manage pain. Think of what you will have to go through if you have surgery and all the activities you will not be able to do once you have recovered. There are clinics in Germany, Spain, England, Israel, and now the US. The website for the new US clinic is www.scoliosisrehab.com you can find more info there and links to research and literature on the Schroth Method and the staff does a great job answering your questions.

[lnetzer]

A snag in our surgery plan....

Hi everyone! It's been a while since I posted. We were all set to begin our blood donation tomorrow for our April surgery when we had to rush to the ER on Monday. Josh was having rapid heartbeat, chest pain, and shortness of breath. All the tests came back normal, just saying that he had an inflammation on the chest wall near his breastbone. Not sure I agree with that but we followed up with our primary doc and we have been referred to a pediatric cardiologist and Josh will have to wear an event monitor to record when his heart is racing. This puts everything on hold until we get the results of that. They are saying it's more than just anxiety, as he had a monitor like this back in August/September of 2003 because of rapid heartbeat. I just want to make sure everything is all good before we go into surgery.

I hope this finds everyone doing fine!

Laurie

[flowerpower]

Hi Laurie,

So sorry to hear about the setbacks. Hope Josh is doing ok. Do the dr.'s have an idea of what may be causing the inflamation? How long does this put off his blood donation?

Renee

[LeaEvelyn]

Hi Laurie,
Sorry to hear about Josh's set back, but as I'm sure you know, it is better to be safe than sorry. Spinal fusion is a major surgery, and one must go into it with the best of health, for a good recovery. Hope all the tests turn out ok. Hey, is Josh really tall and thin? Just wondering, you see, my son is really tall and quite thin for his age. When he had an add on phenomenon develope after his first surgery, his doctor had him tested for Marfans syndrome, which they told me can cause alot of other health problems. Just thought it might be worth mentioning to you. Hope all turns out well, and this doesn't set yous back too far.
Take Care, and keep us posted, ok.
LeaEvelyn

[lnetzer]

Still no answers...

Hi everyone! Thank you for your concerns! I'm still waiting to hear from the cardiologist about getting the monitor set up, plus our surgeon was gone on Friday so I couldn't talk to her, either. Everyone will be getting a call bright and early Monday morning. It's bad enough having setbacks, but then the whole waiting to see what this doctor and that doctor has to say is incredibly frustrating. The way it looks now, I doubt we'll have surgery on our originally scheduled date. But I agree, better to be safe.

Actually, Josh isn't thin, he's got a few extra pounds on him. I'll have to look up that Marfan thing and see what it is. Is everything okay?

Back to search the web!

Laurie

[LeaEvelyn]

Hi Laurie,

Keep us posted on Josh's progress, ok. Everything turned out ok for us, my son didn't have Marfans syndrome. A simple blood test showed he was negitive for this disorder. I just wanted to mention this to you, in case you wanted to look into it. My sons surgeon once said to us; scoliosis is a symptom, 80% of the time, doctors don't know what is causing it. They basicly treat the symptom, which is scoliosis. This is why they call most cases idiopathic, which means unknown. I know there is a few disorders out there that can cause scoliosis, but I don't think your orthopaedic doctors test for them. I'm pretty sure, if you wanted further test done, you would have to go to your regular family doctor.

Good luck to yous. And I hope everything turns out ok.
LeaEvelyn

[lnetzer]

New Surgery Date

LeaEvelyn:

Hi! Well, we got a new surgery date today. Instead of April 10 we now are at May 22. They aren't sure how long Josh will have to wear the event monitor for his heart, it could be anywhere up to 6 weeks. We get it on tomorrow, and they want to make sure we have enough time to get something recorded on it enough times and to be able to evaluate and possibly treat if necessary. Josh was kind of bummed because he just wants it all over with (that and the fact that he would get to miss more school!) but knowing as much as possible and taking care of any other problems is pretty important. We're all still pretty anxious regardless, but hopefully everything will turn out fine and it's just his nerves or something.

I'm glad to hear your son didn't have Marfan's Syndrome. I looked it up and Josh didn't really have any of the other symptoms of it. We're pretty frequent flyers at our family doctor anyhow because of Josh's asthma, so I will ask about any other test the next time we go in.

Thank you again for your concern!

Laurie

[lnetzer]

Lots of delays......

Renee:

The family doctor said it could be any number of things causing the inflammation, but he didn't really think that's what it was. Josh was fine by the time we went to the doctor on Wed. afternoon. Our surgery date is now May 22, and we don't start donating blood now until the end of April. I've got to ask the doctor if we should continue the double dose of iron pills he is on, plus the multi-vitamin....and restart it again next month. When they did the blood work at our hospital ER visit last Monday they said his red cell count was high, and I would imagine that's because of the extra iron. So many questions! I almost cringe at the site of the telephone now because I've spent so much time on it between the appt. changes, questions, insurance, etc. I wish my husband was more phone savvy but he hates to talk on the phone, period!

Laurie