Update on my daugther - been awhile - what to do during surgery?

[jennilynn]

Ok, so work, and kids and life in general... have kept me from posting. I do read alot though... I think denial and fear kept me away too.

Surgery scheduled for Dec. 13 at noon. Got our packet of info from Rady Children's Hospital. That hit it home. My husband has been so cranky and irritable, come to find out it's over the surgery and his fears for her. I am doing ok with it most times. I have my faith and can only pray on it when I get too stressed. Life must go on right now

She's getting a bit more freaked, and is counting the days. She has some pain from the kick and what they found to be an arthritic condition, something to do with the rapid curve growth. She is ready to have it done with!

We go to San Diego for Preop on Nov. 30th and then return the 12th. My son is 9 and tells me now that he wants to go with us and that he's worried for his sister. Of course, all we can do is reassure him. He's supposed to go to school the 13th, but I think I'm going to have my family keep him home and occupied. He has focus issues, ADHD that we manage without meds, I can see some possible issues that day... so we may see if they can just keep him occupied and busy!!

She's read some of the adolescent posts, and I've faxed the info in to the forum to approve her to log in. I think it could help her fears... there's another girl in our town that is having the surgery at Rady on Dec. 1st, so they are emailing an chatting some!

Any suggestions on how to keep sane during the 6 hours she's in surgery!!?? I think I will be a mess!! Luckily my hubby is going to be able to be there too... keep me sane!

Thanks!

[ARodsMom]

Hi Jennilynn, my son has not yet had surgery but is scheduled for Dec 22nd. I hope all goes well with your daughter, glad she found someone to connect with I wish my son would check out this site. I'm interested to see how others who've played the waiting game spent their time and what they suggest. I love to read, but I'm not sure it would be something I could sit and do while he's having surgery.

My husband, like yours, has been dealing with the moodiness and ups and downs about what our son has ahead of him. I think reading through this forum and answered prayer for peace have helped me with it.

Best wishes to you and your family!

[Fingers Crossed]

I was a mess during my daughter's surgery. I think I could have benefited from some valium or something, and have heard from other parents that they were unable to calm down in the days leading up to surgery and during the surgery without a little pharmaceutical help.

Our nurse practitioner did provide regular updates throughout the day and it was always reassuring to see her smiling face and hear her no-nonsense description of where the surgeon was in the procedure.

Luckily, our children's hospital has a Ronald McDonald family area right in the hospital, just a few feet away from the surgery recovery area. We were able to snag a nice little corner there, so we had some space and a TV, etc. My parents were with my husband and I for most of the day, and then my mother-in-law was also there for some of the time.

I was unable to focus on reading and I remember that the TV was on sometimes, but I could not for the life of me tell you what I watched. I was also unable to eat and had to remember to drink water, but leahdragonfly gave that advice and it is good advice -- hospitals are dry and it is so important to remember to keep hydrated.

Do you like to do any kind of needlework? I am pretty helpless in that area, but I did notice several other waiting parents/grandparents keeping busy in that way, and it looked sort of calming.

Along those lines, I don't know if you are a prayer or if you like to meditate, but it really helped me, in quiet moments, to just breathe deeply and try and think positive thoughts.

At almost the end of our VERY long wait, two friends came by and that really was amazingly helpful in passing the time. We were all so stressed and then they were also there to hear the surgeon's report and see the first post-op x-rays. The relief was and still is just indescribable.

You will do fine. All of us parents figure out a way to get through this. Try really hard to get and stay rested before the surgery. You won't get a lot of rest in the hospital and you are going to need all your strength and patience in those first few days after surgery!

[jennilynn]

There is a Ronald McDonald house at Rady, so I'll look at the location when we're there for pre-op... I do know it's a really nice set up there...

Because we're traveling 3 hours to San Diego, it's me, her and her dad going. Two cars so he can come home the next day and be with our son, luckily we have family here so they can keep my 9 yr old son...

I read and will have my kindle, but doubt I'll be able to concentrate enough. The hospital sent a list of things to bring, and one says books, but light reading, now is not the time to read "War and Peace". that amused me some!

I do cross stitch and will probably take the ones I've started but not completed (there's several) as I've not had time lately as I just wrapped up my Associates degree... wheewww, thank goodness there! I hope that will help some. The hospital has a nice chapel and religious personel that I am sure I will talk to. I'm not overly religious I guess, but I do have my faith and prayer and I'm sure it's a big player in how I'm coping now.

The hydration thing.. thanks! That is a biggie and I'll be sure to remember it! I doubt I'll eat! When I am stressed, I don't eat... we shall see...

Thanks!! I know we'll get through this... but it does help to others who have done it!!

jen

[scoliboymom]

although I had packed a novel I was able to do little more then leaf through magazines. I sat, wandered the halls, felt numb, cried, waited, tried doing crossword puzzles. But I think the thing that helped me most to get through the day was a diary I brought. I wrote all kinds of things in it (even though I am not normally a diary person). I also kept writing in it for the duration of my sons stay in hospital so that he would have a little keepsake of what events occured while he was there. He said some very comical things while he was on morphine that he does not remember. Got a real kick out of reading about this after

[jennilynn]

Oh the diary sounds like a fabulous idea. I think we may do that!

I set up a caringbridge.org site for her so she can also get guestbook entries from friends and family. Her friends want updates and I'm NOT texting all of them! - They can log in there and see just how things are going for her ...and when she's up and able, she can log in and blog too!

I know we can get through this! My 9 yr old son broke my heart yesterday. It's seemed like he had no care over this; we told him his granny and papa were watching him while me and dad went to surgery, then dad would come home the following day after surgery. he tells me that he's worried about his sister and wants to come too. I explained that I will call him alot and keep him posted, but that it's a 6 hr surgery and boring at the hospital, that his sister will be fine and he'll see her soon enough after. He shrugged and said ok. He harasses and picks on her so much; that it didnt' click that he would be worried too!

My sis suggested that we keep him from school that day (he's ADHD and not medicated... just manage it with diet and redirection for now... the meds were HORRIBLE for him... he was a zombie)... but I can see issues not focusing and such in school that day. So she, and/or the grandparents are going to do the park, chuck e cheese, and some other stuff to keep his mind off her surgery that day. Thank goodness for family. There's a reason they all moved to Yuma in the last 9 months. Now I know!! We've never had family near, hubby and I were both Marines, so this is a treat... and so welcome with this surgery looming!

I have my good days and bad days... today seems like it's going to be rough. I can't get my mind off of it!! But I'm working so hopefully I will throw myself into this and forget for a bit. I have alot to get done, especially since I'll be taking 2 weeks off at least for the surgery and recovery. Family will keep her after the holidays so she can rest and recover and I can work. I do have the benefit of being able to work from home at times, so that eases my mind some! I'm very dedicated to my job and it's going to be a mountain of paperwork when I get back!! I'm the only one in my office that works on the court filings... they will have someone in our main office deal with emergencies; but the rest of it will wait for me.

Jen

[Fingers Crossed]

Hello!

I agree, the diary is an excellent idea. At the very least, be sure to bring a notebook to write down instructions, questions, etc. Someone here recommended that to me and it was absolutely invaluable. I got a little confused about med doses when we went home and it was really helpful to have my notes.

Setting up a Caring Bridge page is really helpful. Another scoli mom told me what I thought was the most compelling reason: you can't sit and talk on the phone updating everyone, over and over and over. Its exhausting!

So, we set up a Care Page for our daughter. Here is the link and I recently added before and after photos of her back, although I still need to add an update from her last appointment, which was last week (the after photos were taken then):

http://www.carepages.com/carepages/JennaSpineSurgery

We have an older daughter and I can attest that this is really rough on sibs, too. She had a very hard time leading up to surgery, was very anxious and worried. I just told her over and over that we had absolute trust in the surgeon/team . . . and asked her to feel free to vent with me but to try and not scare her sister.

Hang in there! After the surgery you probably will want a book or a couple magazines, and we also watched LOTS of movies.

[Elisa]

These are good suggestions and I'm going to try and remember them if/when my own son is in surgery. I don't knit, crochet or needle point and I probably couldn't concentrate on reading so I'm thinking for me, I'd bring along my laptop and write write write b/c that's something I do like to do. Also, being prone to anxiety, I do have a regular prescription for Ativan and although I don't need it for anxiety these days, I do tend to use it on occasion for my sleep troubles. I can totally see that waiting around while my kid is in surgery could mean a full pill pop or two.