We have a surgery date!

[AnnLF]

Hi All,

I'm writing from the hospital. Lizzie started out doing so well, but we haven't stayed at the same pace. She is on that familiar routine of needing the meds because of the pain, then getting knocked out or nauseated. Hopefully tomorrow will be better. Today, for the first time, I got pretty down. Her brother called her from college and I couldn't rouse her for anything to get her to talk to him. That's when he said, "Mom, is she okay?" So, after all my "be strong" talk, I was a pretty big wimp today. Ah well, this too shall pass, and each day will get better. I didn't get a chance to read everyone's posts, so I'm hoping Briann and Elizabeth are back at home and doing fine. Too bad we can't do an online group hug.
Ann

[KRIS ATKINSON]

Ann, hang in there and God be with you! Kris

[dancermom]

Ann, please know that you and Elizabeth are in my heart and prayers. This is a tough time and we are fighting the pain and anxiety here pretty big time. Hopefully you will have a big turn around soon and you will see an improvement in your daughter. This is so hard to watch and go through with our girls. I truly wish I could give you a hug and let you know it is ok to let down once in a while and not be so strong. I think we all go through that same thing. We have to be strong for our girls and get them through the pain and anxiety, but in the quiet times it is hard to hold it together.

Cheryl, Elizabeth finally had a bowel movement right before going to the doctor's office yesterday. Thankfully. I need to keep her taking things though to keep her bowels soft or each time will be torture for her.

Our main problem is just trying to get comfortable - especially at night time. I was up with her from 12-1 last night and then from 4-4:30 just trying to comfort her and help her figure out what would feel the best way to lay.

This too shall pass is a good saying, but going through this right now is sure hard. Please know that Briann and Elizabeth are in my thoughts and prayers. Hang in there and know I am here to talk if you need me.

Connie

[Cheryl M]

Ann, Everyday will get better than the last and once they get the pain meds adjusted and the nausea under control the recovery is amazing. Briann's PT in the hospital made her walk no matter what. Once she was crying so hard and the PT sent Troy and I out of the room and "made" her walk. It killed us but we know now that she was right. I found that the nurses weren't great about getting her up and that I had to be "mean" and make her on Thursday and Friday and this is when she really started to turn for the better. She would get out of the bed, walk to the door, touch it, walk back, get in the bed, and say "are you happy now!!!!" and a few hours later I'd make her do it again. It was so hard knowing that she was in pain. i also insisted that the nurses give her a bath on Friday and she was furious with me but later that day she was actually released and we came home that night. Make sure they're giving her medicine so she'll go to the bathroom. That was a big turning point too.

My prayers for your Elizabeth.

Cheryl

[AnnLF]

Alleluia! We're home! Elizabeth got released yesterday afternoon and we made it home just before rush hour started. (I had been worried about the stop-and-go motion in heavy traffic.) And all of you...my online support group pals were SO right....the turnaround within 24 hours was absolutly amazing. I think the last time I wrote, I was very down because it was one week from her surgery and she was still so out-of-it. Cheryl, I think you hit the nail on the head...they have to get up walking. Lizzie had two days in a row with a nurse who wasn't, shall we say, dedicated to her job? And Lizzie paid for it, because she had been doing great, and then seemed to go backwards. Once she got a new nurse (at our insistence when Ratchet showed up for a third morning), the improvement was remarkable. So, we're home and we're thrilled that Liz's seven-year-long stint with this is finally over. There was a huge Welcome Home Lizzie sign on the front of our house and that's the first time she actually cried....but the nice thing is, they were tears of joy! (We haven't figured out yet if Liz is very stoic or has a high tolerance for pain, but she didn't really ever cry during this ordeal.)

She actually had a good night last night...she was so happy to be in her own bed. We set the alarm to give the paid medication every four hours and had to wake her up to take it. It's 8:45 a.m. Chicago time as I write this and she's still sleeping. I had been worried about our stairs (we have a 2-story house) but with Ray and I at each elbow, she did fine. With each hurdle, you breathe a sigh of relief, don't you? I'm thinking she should shower today...so I'll be happy when that's over.

Hey, are your girls taller? Liz gained a good two inches. We must get the measuring tape out today -- I'm guessing she's 5'9" and she was 5'7" going into this.
And isn't amazing how badly you want them to pass gas??? Last Saturday, they did an enema because Liz looked about 6 months PG. I'm concerned because it's been a week and she hasn't another one since then. I'm hoping now that we're home and she's moving around more, that things should get churning. She's also taking that Colace. Connie, when you said your Elizabeth finally had a BM, how long did she go without having one?

Here's something I was pleasantly surprised by -- the incision. On my Liz, it's from the the bottom of her neck to the top of her butt, and it's not at all icky looking. Just one long, red straight line. The incision from her anterior fusion is still covered with tape, but the back one doesn't have any dressing on it anymore. That amazed me. I had thought we would be coming home and changing dressings.

Oh and one more thing I wanted to ask. Appetites? Have they come back yet? Liz eats 2 bites of something-- and then is full. Even she is getting frustrated because of all the goodie-type gifts she has been receiving.

Well, we're home now on the "other side" and it's our turn to help folks who were in our shoes a few weeks ago. I feel so happy to be home in my robe, drinking coffee and watching the snow fall. After 10 days of hospital coffee, mine never tasted so good! Love, Ann

[Cheryl M]

WELCOME HOME LIZ! Your recovery will skyrocket each day from here on out. Just remember to sleep a lot and walk a lot and eat when you feel like it.

Briann is so much taller than me now and we were both about 5'51/2" before. I think she must be 5'7" now. I'll let you know when we take the official measurement. We forgot to measure before we went to the hospital.

I don't think a week is all that unusual for a BM. Briann is taking colace 100 mg 3x a day and milk of magnesia. My sister-in-law recommended All Bran Bars and she eats at least one of them per day. She is finally eating salad (filled with spinach leaves) to help with this and iron....she's still very pale. It took her a while to gain her appetite back and started out being good at breakfast and gradually its usually pretty good at all meals but not 100%. She started out eating dry honey nut cheerios for breakfast.

She's been sitting up playing Scrabble with her brother for about an hour. I imagine she'll sleep pretty good after lunch. She only had posterior surgery though so I'm sure her recovery was more simple than Liz's.

We still set an alarm for every 4 hours in the night. I've heard that if you let the pain get really bad that it can set you back 3 days and I sure don't want that.

WE'RE EXCITED THAT YOU'RE HOME AND MERRY CHRISTMAS!!!

Cheryl

[Cheryl M]

Thought I would give you my recipe for Bran Muffins. My college roommate and I made these all the time and I used to make them for Briann when she was a toddler and they always helped. I plan to make a batch today so I hope I'm remembering everything correctly. i usually half this recipe but I think I remember that the batter stays good in the frig for 3-4 weeks. I just make about 6 or 8 muffins at a time.

2 cups of All Bran Cereal
2 Cups of boiling water
Mix these two ingredients in a very large bowl and let cool


1 cup margerine (cream)
3 cups sugar
4 eggs
cream these together and add alternately with the above and below ingredients. I remember getting muscles from mixing all this together.

1 quart buttermilk
5 cups plain flour
5 teaspoons soda
1 teaspoon salt
4 more cups of All Bran Cereal

Store batter covered in the frig. Use pam on muffin pan. Do not add extra liquid (I think i remember the batter being pretty thick) Preheat over 400 deg. and bake for 10-20 minutes.

Hope this might help!

Cheryl

[dancermom]

Hi Cheryl and Ann. I am so glad that we are on this side of the surgery and into recovery, although it is hard at times. Elizabeth is having muscle spasms in her back and it really sends her into a panic when it happens. I have heard it is caused by the muscles starting to heal and walking should help relieve them a little. We are dealing with more emotional issues than physical it seems.

I am so happy to hear that Liz is home from the hospital finally. There is nothing like being back home and having your own things around you. The hospital gets really old.

As far as the BM goes, it took a little over a week for Elizabeth to have her first one, but she seems to be pretty regular now. She has been drinking grape juice and likes to eat apple slices with peanut butter. I only gave her one of the colace type tablets and that has been all. She says it hurts really bad to have the BM, but thankfully she is having them.

We actually got out for a bit yesterday. Elizabeth used the electric wheelchair at Target and got around pretty well although it tired her out pretty good. Our doctor wants us getting her out a little more and encourage her to walk quite a bit.

Take care my friends. It helps to know that you both are going through this with us. We can help each other get through these difficult times.

Connie

[dancermom]

We are concerned about something though with our Elizabeth's recovery. The doctor chose to stop at T12 instead of going to L3 so she wouldn't lose as much flexibility. At this point, her hips are very uneven and the doctor said it is more exaggerated right now as her right hip is swollen and tender from the bone graph taken and her body should balance itself back out over the next couple of months. It is just very discouraging as her posture looks almost more crooked now than before surgery. Just wondered how your girls looked?

Connie

[Cheryl M]

Connie, We must have posted at the same time a few days ago because I didn't see your post. It's good to hear from you. Sounds like Elizabeth is doing great.....TARGET! Briann still gets really tired too.

We had a little mishap during surgery. The pedicle screw at L3, her last vertebrae to be fused, pulled out on one side. The Dr. clipped the rod, I guess at L2, on that side and he said we'd have to keep a close look at it. She also had to receive a pint of donor blood. Briann did not have thoracoplasty and we were worried about the rib hump. The Dr. did a great job correcting this as it is very minor now and if I wasn't really looking I wouldn't notice. We have our post-op tomorrow and hopefully we'll find out more about that pedicle screw. She is also having numbness in her thighs. Not complete numbness but tingling, numbness, etc. Dr. said this should go away.

I pray that your Elizabeth's hips align when the swelling goes down. When is your post-op and how long does the dr. say it will take for the swelling to go down. I, too, would be worried as the things mentioned above concern me and have kept me up at night. Had the dr. intended to go to L3 and changed his mind during surgery? Why did he change his mind?

Its so hard to be patient but I guess their bodies have been through a huge trauma.

Merry Christmas to all of you.

Cheryl

[dancermom]

Good morning Cheryl. Thanks for posting as it helps to read what Briann and others are going through.

Elizabeth is having a lot of muscle spasms in her back that are really bothering her. And, sleeping at night is really hard for her to get comfortable - no matter what we try. She is at a point where she hates to go to bed at night and she will not try to nap during the day. She says it hurts too bad when she wakes up and slightly moves. I guess I will call our doctor's office tomorrow to ask what to do.

We already had that one appt. where it was just 3 days after we got home. Our next appt. is Dec. 21st. He said he wasn't going to do x-rays again at this appt., but he just wanted to check on her. Good luck with your appt. tomorrow and please let me know how it goes.

I bet you are pretty concerned about the mishap during surgery with the pedicle screw. That doesn't sound good. I hope it won't cause any problems in her healing. Our doctor decided before surgery to stop at T12 as her lower curve in the lumbar area was not very big. It just seems to be more exaggerated right now and that is worrisome. Where did the doctor start Briann's fusion at? Elizabeth is fused from T2-T12. I was thinking that Briann's was around T4-L3.

Take care and I will be in touch.

Ann, I hope that Liz is doing well being home from the hospital. This was such a traumatic surgery on their bodies. Please know that I am continuing to keep Briann and your Elizabeth in my prayers as the recovery can be very trying at times.

-Connie

[AnnLF]

Good Morning!

And I do hope that it is a good morning for all of you. We're doing fine here. Liz woke up today and came down the stairs and is sitting in a chair watching a Christmas movie. So, life is good. She has asked numerous times how the other Elizabeths are doing....and is curious about their appetites.

Connie, I feel so badly your Elizabeth isn't getting a good night's sleep. Add that to her misery! Those muscle spasms seem to be the biggest source of complaints here. My Liz is taking Valium for that and it really helps, but today, she seems reluctant to take it because it makes her so loopy. I think she's tired of being out of it -- feels like she's missing out on something. I do hope your doctor can help you out tomorrow. I would call right when the office opens and be a persistent pain-in-the-butt until you get some answers. Is the swelling around her hips down yet? Since tomorrow will be the 2-week mark, I would think that it should. Liz was fused from T2 to L4 and her back appears pretty flat -- but she did have a thoracoplasty. I almost feel guilty telling you that and I don't want it to upset you since you're already worried, but thought you might store it will all the other information you're collecting.

Cheryl, thanks for the recipe! It looks like it will make LOTS of muffins. I will definitely try it out. Yesterday, I made soft-boiled eggs, with bread bits and some butter, and Liz ate a couple of spoonfuls -- the most she's eaten since before the surgery. She's always had such a healthy appetite, that it's really bothering her that she has no interest in food. Still no BM...I'll keep you posted! Liz also has had that numbness in her thighs, but it seems to be getting better the more she walks. You are so right about the walking. That's why I feel we lost a couple of days in the hospital because her nurse seemed happy when she would walk in the room and find Liz asleep. The two days we had this nurse, she got up only to go to the bathroom. When we got the new nurse, that's when we saw the turnaround. Are there recovery concerns with this screw? When you say it pulled out, do you mean that it pulled out of the rod? That's where I get confused, why couldn't they just try a new one instead of clipping that one? I was a journalism major -- and am quite inept with a lot of the medical talk. Good luck with your post-op tomorrow and hope that Briann is getting stronger every day!

Gotta run. Liz wants to walk around the house! We continue to pray for the Elizabeths and hope their recovery gets better and better. I'll be anxious to hear from you tomorrow -- to hear about what Elizabeth's doctor is suggesting and to hear about Briann's post-op. Good luck to you both. Love, Ann

[AnnLF]

Hey Cheryl and Connie,

How're things going?
Cheryl, did your post-op go smoothly? Did they do x-rays? How did Briann's spine look? Hope she's getting stronger every day.
Connie, is Elizabeth getting more comfortable and sleeping better? I hope you heard from the doctor about the swelling.
We're doing fine here. Each day, I see more improvement. You're right, Cheryl...YOUTH!
Still no BM....I'll let you know when the "eagle has landed." Man, I would think it would start to get uncomfortable, but Liz isn't really complaining. She's taking the colace, and started the Milk of Magnesia yesterday, so we'll see.....

Hope you're all doing great. We're thinking of you lots and my Liz asks frequently how the "other Elizabeths" are doing. Prayers and hugs from Chicago, Ann

[dancermom]

Hi Ann and Cheryl. We had a much better night last night and I am praying for another good one. The doctor's office called me back yesterday and told me not to wake Elizabeth up in the middle of the night for pain meds any more - just to let her sleep and if she woke needing pain meds then to give it to her. They also let us start her on ibuprofen yesterday - 400mg 3x/day. She only has 3 valiums left and I don't think they are going to give us any more. she is also still taking Lortabs, but we have been able to spread the hours out a little more. Anyway - Elizabeth went to sleep around 10:15 or 10:30 last night and slept until 6:45 this morning. She was stiff when she woke up but it wasn't too bad. She seems to be doing better as of last night and I am not sure what has made the turn around - maybe just time.

Her hip is still curving out but it may be improving a little. We go back to the doctor a week from tomorrow and will definitely be asking more about what to expect. They also told me to bring my digital camera and I could take a picture of her before and after x-rays.

Ann, I hope that Liz can get her stomach to working good soon as she can have success in that area. It will definitely help her stomach and body feel better. I am thankful that we seem to be ok in that area now. Elizabeth loves to eat apples with peanut butter and I think that has been helping.

Cheryl, I also hope that Briann's post-op appt. went well today. She sounds like she is doing really well.

I am thankful that all of us are on this side of the surgery, but I also will be glad when our girls get stronger and feel more like themselves.

Take care everyone.

Connie

[Cheryl M]

This is really weird. I posted somewhere about Briann's post-op but I can't seem to find it.

Anyway, things looked great. She was very anxious about the appointment and the ride into Charlotte (25 minutes) was not fun. They did take an x-ray. She measured thoracic 22 and lumbar 20. The dr. says these could settle a little and move 5 - 10 degrees but doesn't think they will. she is very balanced. We will have to keep an eye on the L3 where the screw pulled out and make sure it doesn't progress. Again, he thinks all will be well. The sensitivity and numbness in her thighs is still a problem and he told her to rub the sensitive spots to desensitize the area. He feels the numbness will go away although there's a possibility that it won't. After the appointment, Briann was fine. We even stopped at Friendly's for one of those Orange Slammers she really likes.

Hope all continues to go well with all of you.

Merry Christmas
Cheryl