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rosa.smm
06-01-2011, 10:26 AM
Well we finally have a surgery date (june 2 one day away), for Kristen. She is very nervous and totally stressed out (as are we all). The major problem is she now has strep throat and a cough. She has been on antibiotics for 72 hours, getting better, but they won't let us know whether they will cancel till tomorrow morning admitting.

I can't stand the thought of her getting surgery if she is not healthy enough for it, but the thought of rescheduling and having to do the pre surgery month all over again is heart breaking.

Anyone have thoughts as to whether it will reschedule???

They are still talking of fusing T1 to L4 and be 8 to 10 hours. Any suggestions on what I do with 8 to 10 hours so I don't go insane????

I will let you know how it goes, one way or another.


Kristen's MOM

LaurieAnne
06-01-2011, 11:36 AM
Well we finally have a surgery date (june 2 one day away), for Kristen. She is very nervous and totally stressed out (as are we all). The major problem is she now has strep throat and a cough. She has been on antibiotics for 72 hours, getting better, but they won't let us know whether they will cancel till tomorrow morning admitting.

I can't stand the thought of her getting surgery if she is not healthy enough for it, but the thought of rescheduling and having to do the pre surgery month all over again is heart breaking.

Anyone have thoughts as to whether it will reschedule???

They are still talking of fusing T1 to L4 and be 8 to 10 hours. Any suggestions on what I do with 8 to 10 hours so I don't go insane????

I will let you know how it goes, one way or another.


Kristen's MOM

Hi Kristin's Mom,

I wish I had some good advice but the decision regarding surgery is best left up to the surgeon. I know that during and after surgery she will stay on antibiotics but I know they want your immune system as strong as possible too. I would just be sure she rests as much as possible and drinks lots of fluids. I will say some prayers for your daughter and your family. Going through this surgery myself it is a long journey but I believe it is worth it. I know how scary it is right now for everyone but keep your chin up and keeping believing the best. Prayer is what got me through this. My parents had to endure the 8 hour wait during my surgery and what seemed to help them was praying, talking, taking walks, watching tv, and even doing word search puzzles (I had SOOO many of these given to me by family and friends I am set for life...lol!). Anyway I'm sorry I'm not much help but I wanted to answer your post and let you know you are not alone and people care. Let us know how things go.

rosa.smm
06-01-2011, 11:44 AM
Your comments do help! It is nice to know some one else has made it through! Your curves sound really similar to Kristen and it looks like the results were good. That will help too.

I will keep you posted.

Kristen's MOM

Elisa
06-01-2011, 05:12 PM
Hoping everything goes well with your daughter's surgery if in fact she goes through with it tomorrow. I was a nervous wreck the week before my son's surgery in case he got sick b/c the hospital did tell me they wouldn't do the surgery (two) if he was sick and we'd have to reschedule. I ended up pulling him out of school about four or five days before his surgeries to keep him away from the other kids. My sister and her husband came up for a visit a couple of days before we headed south to the hospital and the next morning he woke up with a bad cold, uggg. Thankfully my son didn't contract it.

My son had two shorter surgeries four weeks apart which I found pretty easy to deal with b/c the time did go by fast. The first surgery, I had my sister and BIL hang out at the hospital with me and the second surgery I had a member from this forum (hdugger) come by the hospital and hang out with me and we had lunch and talked etc. I also spent a bit of time on my laptop checking out the forum here and giving updates which helped to distract me. I also was prepared to take some anti-anxiety medication but actually I ended up not needing any but I had it on hand just in case.

Please keep us posted!

rosa.smm
06-02-2011, 09:38 AM
Well they took Kristen in for surgery about 45 minutes ago strep throat and all so it looks like it's a go. Now only another 8 or 9 hours to wait!! She did so well I can't believe it!! I will fill you all in as we get updates.

Thanks for all the prayers and well wishes.
Kristen's MOM

Elisa
06-02-2011, 05:23 PM
Any updates yet? How are you doing?

rosa.smm
06-03-2011, 02:29 PM
It didn't go as well as expected. It was over 10 hours long and as they were putting the rods in they lost feeling and motor readings for the left side went bad. They had to pull out the rods and booked a ct and MRI. They did a wale up test and the feeling came back they tried again and feeling went again. So they closedher up with just the screws in and need to operate next week to put on the rods. They have decided to be much more coservative with the correction as the bad top curve has a really short spinal cord apparently. She is in a lot of pain and we are all quite disheartened to know we have to do this all again next Thursday. Every pain she feels now she knows she will be reliving next week. Add to that we already know the correction won't be nearly as good as we had hoped.

We'll try to make it through the next week or two?!?

Mom of Kristen

Pooka1
06-03-2011, 02:49 PM
Rosa.smm,

I'm very sorry to hear they could not get the rods in. But it is heartening to know that the spinal cord monitoring was doing its job. This technology is the reason neuro injuries have been reduced to very small numbers.

It's a very tough road for your daughter. Life is very unfair. Please stay strong and realize they will eventually stabilize her curve and she will move past this and live her life.

Good luck.

Sharon

Elisa
06-03-2011, 07:16 PM
Oh Rosa, that is so disappointing her surgery didn't go as planned. As Pooka said, the spinal monitoring was doing its job and alerted the surgeon to back off. The same thing happened down in Portland when my son had his surgeries with a young girl who was there at the same time. The alarm went off so they stopped the surgery and postponed it until the following week. It was tough for mom and dad to tell her that she had to go through another operation but these things happen. During the week she had to wait for her second surgery, she was a bit depressed and she also had to wear a back brace b/c her spine was unstable but the second surgery went totally fine. Not what we want to deal with but these things happen. Please keep us updated.

rosa.smm
06-15-2011, 08:30 AM
Sadly, another update.....After Kristen's second surgery (6 hours and one week after the first), they thought everything went well. Wriggling her toes and everything! Two days later she started having paralysis on both legs and up to T10(numb and tingly and weird up to her belly button). She couldn't move her one leg by the end of day three and the other had no feeling but some strength. *They were starting to look at one or two more emergency surgeries. *After million tests (mri, xrays, two ct scans, myelogram) and consultation with every doctor (ortho surgeons, neurologists, neirophysiologists) from Saskatoon to Dallas her legs have started to improve on their own. The conclusion is there is damage to the spinal cord, some will heal on it's own, and no one knows how far she will improve. *Physio, medical care and watch and wait.

So a new holding pattern has arisen. Any thoughts or suggestions, as always are welcome?!

MomtoM
06-15-2011, 08:34 AM
I'm sorry to hear about how tough it's been...all the best to Kristen...xoxo

KimR
06-15-2011, 09:47 AM
Rosa,

I am praying for you and Kristen. As a scoli-mom myself, I feel my daughters pain.
Hang in there. It sounds like you have whole team of Dr's on your daughters side. I always like when they work as a team and bring others in to consult.
You take good care of YOU so you can be there for Kristen as she recovers.
Someone asked me that the other day (a nurse), "How are you taking care of you?" and I thought, ME? She waited for me to answer as I stumbled to figure out what I was supposed to say. Still am, but I am getting better at it.

Not sure if you like music, but look up Mandesa, "Stronger" on You Tube. That song encourages me in a really big way.

Great Big Hug,

Kim

rosa.smm
06-15-2011, 08:10 PM
Thank you mom2m for your encouragement.

Thank you Kim. You hit a chord. I listened to "stronger" and I cried, but in a good way. The song was perfect and the message was just what I needed to hear! Kristen continues to improve, which is miracle.
But I also know there is alot of work to be done. We will try to continue to take care of each other and lean on friends and faith.
Thanks again,
Rosa

CAmomof2
06-16-2011, 04:09 PM
Dear Rosa.smm - I wish I had something insightful to tell you, but all I have is a great big cyber hug for you and Kristen. Please tell her that many people are rooting for her to get better, and please keep us informed with the latest news. Hugs.

rosa.smm
06-20-2011, 12:21 AM
Well time for another update. Kristen continues, in hospital, to work very hard at physio. She can now do 30 to 40 meters with a walker. She is practicing stairs tomorrow. She is very tired of being in hospital (20 days) and wants to get home to our city and friends and family

She has had extra difficulties as when they took out the catheter her bladder has stopped working. They said that was common as she had the catheter in for close to two weeks and was on morphine for so long. It could have to do with the spinal cord damage as well. This has her very upset as she has to do in and out catheters every few hours to retrain the bladder. Any one have experience with that working???

We are hoping to get transferred either in or outpatient to a rehabilitation hospital in our home town. Her legs are still tingly and nimb in spots and don't have the strength she is used to. Hopefully the rehab will correct much of that. It's so hardcto know what is caused by the fusion and recovering from that and what is due to the spinal cord injury. I guess we just wait and see

Anyone have suggestions as to what is the most comfortable way to ride in a car home for three hours?

Thanks,
Rosa. (Kristens Mom )

braceyourself
06-20-2011, 08:54 AM
This might not be possible, but I thought I would suggest it anyway.

I had a 3 hour trip home too, and we have some friends that own an RV. They let us borrow it. It was pretty crazy for my dad to drive that thing home from Chicago, but it was the most comfortable thing ever. I've heard that the drive home is very difficult, and I actually slept the entire way home. If that can't happen, I would just say the obvious. Bring lots and lots of pillows.

Hope things keep getting better for you all!

Pooka1
06-20-2011, 01:06 PM
Rosa,

Very glad to read your update.

I think I have read that most of the neuro injuries associated with this surgery are temporary. Maybe your surgeon has addressed this. With the monitoring, it is extremely rare to come away with a permanent injury. It sounds like she is in recovery so that is great.

The bladder issue will likely resolve. One of my kids had an issue with that but you need to be careful Kristin doesn't get a bladder stretch injury during the recovery. That is completely avoidable and is a bad nursing error. It should never happen.

Good luck.

Sharon

KimR
06-23-2011, 11:36 PM
Just wanted to say "hello" and I think of you and Kristen often.
I do not have any advice as we are just nearing surgery date. I want to encourage you to ask lots of questions and if you don't get a clear answer ask another person.
I got really confused when talking to Shriners today and I said, I am sorry... I am really confused and I do not understand what you mean. It felt good to admit that.
The nurse patiently tried to exain the complex wait list to me and how the short wait list worked. My sweet girls rib hump and curve seems to be growing by the day! (Really!). And not sure why but her other side seems to be growing a hump too???
Did not think that could happen.

Hugs, Kim

kennedy
07-06-2011, 09:40 PM
rosa i hope kristen is doing well i keep her in my thoughts

rosa.smm
07-26-2011, 12:27 PM
Thnaks to everyone for the prayer's and good thoughts.
Kristen is now home and an outpatient at the local rehabilitation hospital. She is continuing to improve everyday. She is now mostly walking with a cane (wheel chair and walkers are saved for long days, or line ups) she is getting stronger and more feeling back all the time. She is working on all her rehab exercises so hard (some days too hard and I have to suggest she back off and rest.

She is still in some pain. This was not helped by the fact her incision got infected. She has been on antibiotics for one month and has one week left to go. It is still draining so that is bothersome and worriesome. She

She is now at the stage she is bored and is missing the things she usually does (dance, life guard, swim and run). But she is also feeling too sore to compalin too much. We are in full on planning mode trying to see if she will be ready for university in September. Trying to figure out how to get to and from class, how much she will be able to take for length of day, class assigments, how to carry all her school stuff?\, and how to fit the rehab in.

They still can't say how much all the spinal cord will recover, but mostly they are amazed she has come so far so fast. She is monthes ahead of where they thought she would be.

We try to thank God every day for all that has improved and try not to whine about the things that still need to improve! (Some days she is better at that and some days I am!)

kennedy
07-26-2011, 10:41 PM
rosa thanks for the up date on kristen.

Pooka1
07-27-2011, 06:47 AM
Great progress! It sounds like she will make a very good recovery!

She is getting great care. Spinal cord injury seems to be an active research area so that's good.

I wish Kristen continued success.