3 weeks Post Op

It's hard to believe that three weeks ago today Danielle had her life changing scoliosis surgery.  At this time three weeks ago we were in St. Louis Children's Hospital PICU. It's still hard to believe she has 2 rods and 22 screws in her back.  Her back is straight!  We are patiently waiting for the day when Danielle can say she is pain free!  I am so happy to say that she is no longer taking Oxycodone (or Tylenol for that matter).  She is still taking  prescription medication twice a day for muscle soreness.  Her incision doesn't hurt and she just can't wait until the glue starts to peel off.  Her back gets very stiff and sore.  She explains it as "tired" sometimes.  When her back gets sore she lies down to rest.  Having said that she has had TROUBLE sleeping at night lately.  Yesterday she tried eliminating her afternoon nap and just laid down to rest.  She slept much better at night,  only waking up once.  Her main problem with sleeping is that after awhile she is just simply uncomfortable and she gets very frustrated. She felt like her bed was hard so we put the box springs back on the bed and flipped the mattress back to the pillow top.  That has helped too and she still feels like she is getting plenty of support.

Danielle is walking and doing more every day.  Saturday afternoon Danielle was getting pretty down about school and not being able to be with her friends. Her dad decided it would be OK to take her out to eat.  We traveled 30 miles down the road to a pizza place we love. I was just a LITTLE nervous.  It was just what Danielle needed.  It was the most I have seen her eat since surgery and she was laughing and having a nice time!  We then came home to watch a movie. Since we've been home, Saturday evening was the best Danielle has felt both inside and out.  On Sunday before it got FRIGID outside once again, we walked down the driveway and to the corner and back.  It felt so good to her to be outside to walk and get fresh air!

Danielle is really working to get caught up in her classwork so that she can go back to school at least for part of the day next week.  She did do some homework over her Christmas break but still has a ton to do.  This is very overwhelming to her at times.  It is getting easier to focus for longer periods of time.  

After a couple of days of just seeing family she gets a little down.  Seems like her friends always know when it is time for a visit!!  Her friends play basketball and she realizes that she just won't be able to sit through both a girls and boys game in one evening. Only the girls played this evening and she got to go watch them win! She loved that!  

We are both excited about going back to school next week.  I miss my class and friends as much as Danielle misses her friends. I think Monday will really wear her out and she will have to listen to her body and come home when she is tired and rest.

Thanks for checking in on us. Thanks for your continued support and prayers!

My help comes from the Lord, Who made heaven and earth.  Psalm 121:2     

3 weeks post-op 1-28-14
Still seeing muscle swelling in Danielle's lower back

Night before surgery 1-6-14

Better

Danielle is getting better every day.  Her progress is slow.  She wishes she could do more and move more quickly.  Her lung capacity is still low and that frustrates her.  This is a side effect of the surgery. Being a choir member she has always been able to take large deep breaths.  .  She will gain that back but right now is annoyed by it.  She does some breathing exercises to help get her full lung capacity back sooner.  She is feeling much better and has even began to work on homework.  She wanted to go to the basketball game last night but decided since it was out of town to stay home.  She was afraid she would get tired and more sore and then have to deal with a car ride home (even though it was only 12 miles).  She isn't sleeping as well and still has very vivid strange dreams.  She gets up sometimes around 4 or 5 am and walks around a little to get rid of some of her stiffness.  She is at her best late afternoon and in the evening.  She still tires easily and naps in the afternoon.  Overall, I think she is really doing well! Thanks again for all your thoughts and prayers. We do appreciate everything!

Not Feeling So Well

It was 2 weeks on Tuesday since Danielle has had surgery.  She was feeling so much better over the weekend that when Monday came around and she was feeling worse and we were shocked.  Monday, Tuesday and this morning Danielle has been dealing with stomach issues. She threw up Monday and Tuesday (which is NOT fun with a very sore back.).  Her stomach has been bothering her and her back is hurting pretty bad.  She would be up for an hour or so and then sleep a couple of hours.  So needless to say she has not attempted to do any homework. :(  She was able to take her first shower  on Tuesday since surgery and that felt WONDERFUL to her.  Her incision still is covered with glue but it really looks great.  At around 10:30 today I talked to a person with pain management from the hospital, we have changed up her medication a little and she had a wonderful afternoon!  Monday and Tuesday she ate a LITTLE bit of lunch and then slept the afternoon away.  This morning after a shower she laid down for a while and has been up all afternoon.  She ate a little for lunch and has sat up and even worked on her computer this afternoon.  She didn't lay down to rest until around 4:30.  This is the best she's felt since Sunday.  I think that what we have changed in her medication has already made a difference.  She's tired of hurting and she's tired of sitting in the only chair  we have in the living room that is firm enough to support her back.  She said she'd love to just curl up in a ball or sit in the recliner or couch.  Monday and Tuesday were hard on her outlook. Hopefully we are headed the right direction once again! 

The Incision

We came home from the hospital 1 week ago today. So many things since then.......
Danielle continues to get better and stronger every day!  Her progress is slow and steady.  Mornings are still the worst part of her entire day.  Danielle still takes OxyCodone every 3 1/2 to 4 hours for pain.  She did take her last OxyContin today. She has not taken Flexeril for her muscle spasms today. (I hope to be finished with this as well.)  I continue to give her a daily sponge bath because she can't get the incision wet until Tuesday.  Tuesday will be the 2 week mark and she will be able to take a shower.  This also means we won't need to go to the beauty shop to get her hair washed every other day.  She still tires very easily and continues to take a nap in the morning and a long nap in the afternoon.  I still have to help her to lie down and to roll to her side.  I also help her get dressed.  I have mentioned that when she lies down her shoulders and hips need to be lined up. She has regained enough strength that she can pick up her hips and move them (most of the time.)  Her back is starting to itch but it is so tender that it hurts to scratch down the side of the incision.  I run the palms of my hands gently down the side of her back to relieve some of the itching.  She still doesn't have much of an appetite and she has very strange vivid dreams, both side effects of the medication.

Last night Danielle attended her brother's basketball game.  I was very nervous about taking her.  She still has to be VERY careful about getting sick.  Any type of infection will settle right around her rods.  We went in a side door and sat on the stage to watch the game.  The administrators got Danielle an office chair with a firm high back to sit in.  The game was wonderful (tournament champs) and it felt awesome to Danielle to be out of the house. She was thrilled to get to sit next to her best friend who hadn't been able to visit the house due to being sick.   She was sore and TIRED when we got home.  She was very sore this morning.  She felt much better after taking a nap in the afternoon.  She is walking around the house more and sitting up much more.

Danielle's incision is 15" long and is held together by purple glue.  The glue will come off on it's own.  Her incision really looks wonderful.  She has no staples.  However, she has staple marks around the entire perimeter of her back.  They stapled the dressing on her while doing surgery.  People have asked how much taller she is.....she gained 1 1/4 in. and is now 5'8" tall.  Yesterday she told me she feels like her body "fits" now. Before surgery she felt like her middle was just scrunched up.

We have received so many cards, balloons, and kind words on our blog and on facebook.  Danielle enjoyes all the visitors too.  We have also had some delicious food brought to our home. We had great care packages with snacks and reading material sent with us to the hospital.  Friends and family have also picked up a few groceries for us! We feel so incredibly blessed to be surrounded by such wonderful family and community.  I am overwhelmed by all the compassion, kindness and prayers that have been showered upon us and  just want to say THANK YOU SO VERY MUCH!  Your kind words of encouragement and prayers have gotten us through many difficult moments.  God has blessed us in so many ways!  Danielle is so strong and brave and I am so proud of her!

Danielle's 15" incision.  

Danielle's cousin Kelsi brought a great big gift bag.  Inside were 16 smaller gifts all wrapped with a note on the outside.  She got clappers.."if your parents are not listening you use these to get their attention."  The glasses above are her disguise so she can "disappear for a while."  She got a loud horn..."if they (your parents) are still ignoring you."  The red hair is  "so your hair doesn't feel so short now that you are taller."  Danielle had lots of fun opening up all the gag gifts!  Thanks Kelsi!

Danielle's little cousin is pictured with Danielle below.  She was so afraid of Danielle at first.  She would just look at Danielle from a distance.  She was afraid she would hurt Danielle.  Her parents really talked to her about being careful around Danielle and told her that Danielle would not be able to pick her up. They were both happy to see each other!

Home Care

We have been home now for a couple of days.  Danielle is making progress.  We've had to make a few adjustments.....her pillow top mattress was too high so we removed the box springs and then the pillow top was too soft so we flipped the mattress. Danielle is not allowed to sit or lie down on the couch or in the recliners.  Not only are they too soft but they also sit too low for her to get into.  We borrowed a glider rocker for her to sit in.  It is cushioned but is firm enough for her to sit in.  We have a "granny lift" on the toilet also.  She is still taking sponge baths. I am unable to wash her hair at home because she is not allowed to lean forward and we cannot get her back wet.  We went downtown to Creative Cuts and Melissa wahed her hair today. She felt awesome after that!!!

Danielle is still experiencing quite a bit of pain.  Mornings are HORRIBLE.  She is stiff and her back hurts a lot.  I get up every 4 houurs at night to give her medications and help her "log roll" to her side. She is pretty teary in the mornings from the pain. I help her get in and out of bed. She really does well getting in and out of chairs but has to have someone there for support and to help her balance.  She walks around the house and yesterday she went all the way down the basement stairs and walked around a little before coming back upstairs.  She was having what she said was a horrible day yesterday. Then about 6 pm said suddenly that she felt better than ever!  Stephanie came and visited her.  After she left Danielle was back in pain again.  She was crying and said. "I just don't understand how I could feel so good a while ago and hurt so bad now."  I stay on top of the medicines to try to keep her from being in too much pain.  She is on OxyContin every 12 hours and OxyCodone every 3-4 hours for pain.  If she is still in pain she gets Tylenol.  She gets Flexeril every 12 hours as needed for muscle spasms (so far we have taken this every 12 hours).  With all this pain medication she is on a laxative 2 time a day and drinks a glass of diluted  MiraLax.  We are on a pain management weaning plan that I am following to a T.  I write down the time of day I give her medications to make sure I am giving everything correctly.   She has not attempted to do any homework since going to the hospital.  She wears out quickly.  She usually is up and awayke for a couple of hours and then rests.  Usually when she lays down to just rest a little she ends up falling asleep.  I don't think she would get too much quality homework done with all the pain meds.  She really hasn't had much of an appetite yet either.  She ususally takes a few bites and is done.  Today she actually ate a whole bowl of potato soup for lunch!

Having said all this Danielle is doing better than to be expected according to the docotor.  She is walking and can really move around quite well.  We are taking this one day at a time.  I keep telling her she just had a major surgery.  Dramatic changes were made to her body.  It takes TIME and patience to heal.

Thanks again everyone for the words of encouragement and keeping us in your prayers!

Home

We are so glad to be home.  Danielle's brothers welcomed her home with balloons and a stuffed animal!  She was so glad to see them!   The trip today was very hard on Danielle.  She is sore in places where she wasn't sore before.  We stopped several times so that she could get out of the car and walk around.  Getting in and out of the Yukon was tricky.  We had to borrow a chair because our couch and recliners sink too low for her and are also too soft.  She needs something firm and with good back support while sitting.  Her therapy while home is to sit up and walk.  She was very tired and sore today.  I woke her at 10 pm  to give meds and will wake her up at 12:30 to give her more meds and help her turn from her side to her back. It feels so good to be home and I know Danielle will continue to progress and get better every day!  Thanks to my sister Rhonda for visiting us in the hospital on Friday and bringing fruit for us to eat!  Thanks to everyone who helped keep my boys at home fed too!  I also came home to food in my refrigerator!  WOW!  We also appreciate all the encouraging words and prayers!

We get to Come Home

We have been released to come home.  Mornings are bad for Danielle.  Her back hurts a lot.  I hope the ride home isn't too terrible.  We will leave around 10!

Below she is getting her hair washed one more time before we leave.

Getting Ready to Say Good-bye!

We've been told we get to go home tomorrow!  We have filled our prescriptions and we have talked about post-op procedures at home.  Danielle is rolling to her side and can get in and out of a chair on her own. She still needs help getting out of bed.  She is walking on her own (with someone always beside her).  She has to remember NO LEANING, NO TWISTING, NO LIFTING, and she has to keep hips and shoulders aligned while sitting and lying down.  Everyone at St. Louis Children's Hospital has been wonderful.  We want to thank all the doctors, respitory therapists, nurses, nurse techs, and physical therapists. We've had a great experience here but we just can't wait to go home!

Physical Therapists Tim and Erin

Danielle and her favorite Nurse Tech Ashley

10:15 pm Look at all the balloons!

Happy Day

Danielle is still doing wonderful.  She is in pain but she works through it.  She walked 3 times yesterday and did an  amazing job!  They took the drain in her back out that was draining excess blood and fluid from her back. They also removed the tape from her incesion. It looks great!  They will remove her catheter this morning too.  She is hungry, also a good sign.  The best news.....we might get to go home tomorrow! Yippee!

Worst Day Ever.....Well Maybe Not

The day started off pretty rough. Danielle had physical therapy at 9:30 and walked up the hall and back.  That was good.  She then had to sit in a chair for an hour. That was PAINFUL. She said "This is the worst day of my life," with tears running down her face.  She then slept and slept.

Physical therapy came back at 2 after she had her hair washed and she was ready to go!  She took a lap around the entire floor AND went up 2 steps and down 4 steps twice!  She then took another lap and sat for 30 minutes and is still alert and happy!  Doug and I are so pleased. Amazing after what we saw this morning.  I can't get the video of Danielle to upload.  Sorry.  I did post the video on Facebook if you are interested.

Walking

It's 6:30 pm. Danielle is resting now. She's had quite a day.  She has developed a cough with congestion in her lungs. They want her to cough strong ( which hurts her back), and do some deep breathing exercises.  Last night along with the cough she developed a fever. They weren't concerned at first but when the fever got higher and wouldn't go away they were a little concerned.  Because of her symptoms and the fact that there is flu in the hospital, they tested her for the flu.  Thank The Lord she tested negative for that!  She did have a flu shot in the fall, but that doesn't help with all strands. After resting some this morning PT came in.  Danielle took her first steps! She walked about 30 or 40 steps then sat up in a chair for 45 minutes.  She doesn't like the sitting.  It really hurts her.  Sitting puts more pressure on her back than walking.  They took her off of her pump pain medicine and she is now on oral pain medicine (OxyContin). After a nice nap she got a sponge bath and her hair washed.  She felt so  much better and her fever broke.  PT came back in and she walked down the hall.  She then sat for over an hour.  She was READY to lie down after all that.  She is still on a liquid diet.  We are waiting for her tummy and intestines to "wake up."  She also had 2 visitors today. Two of her great aunts, Sr. Eileen Schieber and Sr. Mary Hubert McQuinn.  They live in and near O'Fallon.  All the nurses and the physical therapist keep telling us how wonderful she is doing.  She's positive and so strong.  She gets frustrated when she has to sit and I've seen some tears then. (She does save the tears for just her dad and I though!). Oh yea, I almost forgot she rolled to her side and then later to her back almost totally on her own today!

I know I keep saying this but, thank you for all the prayers and support.  We really enjoy reading all the comments!  

Walking in the morning.

Walking in the afternoon.

Sitting Up for the 1st Time

It seems as soon as I updated the blog at 10:30 some changes began to take place. Danielle became nauseated for the first time while still in PICU.  She had  trouble with her oxygen levels when sleeping so she is on oxygen.  At around 11:30 today we got to move up to a room on the 10th floor.  The movement on and off the elevator made her sick. As soon as we got settled, physical therapy came in. She told us that Danielle would be sitting up twice today for 15 to 20 minutes.  The process includes a team of 2 "log rolling" her to one side.  Danielle then puts her arms around the PT as the aide lifts Danielle's legs. They then help her to turn and sit.  After she sat  on the edge of the bed and caught her breath Danielle then hugged the PT again and she stood up and drug her feet and turned and sat in a chair.  She became light headed after that and got sick one more time. She is on medication to prevent her from getting sick but with all the movement it happened anyway.  She sat up for about 20 minutes and in her words was "ready to lay down again."  It's 2:00 pm and she is resting peacefully on her side again.

 

The x-rays tell the whole story...The one on the left is the x-ray that was taken when we were here in December.  The x-ray shows how her left side really curves in and her right side is straight. .  The x-ray on the right was taken in the operating room.  Danielle was laying on a table and not standing for this x-ray.  You can see the rods and screws. Dr. Lenke had to go up pretty high to correct the kyphosis.  Notice how both of her sides curve evenly!   While lying in the PICU yesterday we were telling Danielle about this x-ray.  She could hardly wait to see it.  She ran her hands down her side and said "Mom, both my sides feel the same now."  There's no huge hump on the right and big curve on the left!  Sleeping should be more comfortable as well.  Before surgery she almost always slept on her back because any other position put too much pressure on one side or the other and she hurt. 

One Day Down

"One day down."  Those were Danielle's words this morning.  Danielle is doing very well. She was alert more than I expected yesterday.  She talked to her brothers on the phone last night.  Her speech is a little slurred at times and she'll almost doze off in the middle of a sentence.  That makes me laugh.  She'll look at me funny and say, "What are you laughing at, I didn't say anything funny."  It really annoys her when she thinks I'm laughing at her.   They have turned her on her side 4 different times now.  Dr. Lenke and his staff  came in this morning and said she looks good.  She was awake from 4-6am this morning and the pain meds are making her itchy so they gave her Benedryl in one of her IV's. That knocked her right out.  We have been giving her some ice chips and she has been cleared to have liquids today. We will be moving out of PICU to the 10th floor today sometime.  I will post an address when I get it.  Her pain level has increased and she is uncomfortable at times. At one point she said "I just want to curl up into a ball."  She will be sitting up today but not sure they will have her stand up.  She is a little nervous about that because when they turn her to her side it is painful.  She is anticipating that sitting up will be painful too.  The hospital staff and volunteers here at St. Louis Children's Hospital are wonderful!  I have read the comments posted to Danielle and each one of them put a smile on her face.  Thanks so much for all the support and prayers that are coming our way!

**I'm not sure why the time on the blog posts are so off.  The time of this post said 8:33 am and it is 10:30 am.

Recovery

We have been with Danielle in PICU since about 3:30 or so. She is really doing great!  She has been awake off and on all evening. More asleep than awake.  She is very sleepy.  She has a pump for pain medication. She is in charge of it herself.  She laid on her side for a couple of hours.  She's been her witty self when she's awake.  She was frustrated because she wanted to listen to the games and she slept through most of them. We updated her when she was awake. Her face isn't as swollen as we anticipated. She really looks great considering what she has been through. She is positive and when the nurses come in to check on her (they always have to wake her up) she smiles and says "Thanks!"  The first picture is when we just got into her room in PICU and the second was taken at around 9:15 pm.

Out of surgery

It's 2pm Danielle is out of surgery and headed to recovery.  We are waiting for a call from them to head up there.  Dr. Lenke came and talked with us.. He says everything went very well.   He showed us the x-rays. She has a straight back!  

News from the Operating Room

It is noon.  Danielle was wheeled away at 7:30 am sharp.  All the rods and screws are in and they took a final x-ray. If Dr. Lenke is satisfied they will begin to close.  They have monitored her spinal cord the entire time and everything looks great.  All her vitals are great too.  Danielle's blood loss for this type of surgery is low and she has not had to have a blood transfusion!  WAY TO GO ALL YOU PRAYER ANGELS! If all goes well Dr. Lenke will be out to talk to us in 1 1/2 to 2 hours. 

Waiting

All is going well according to the reports we've gotten from the operating room.  They called at 9:00 and again at 10:30.  They said all Danielle's vitals are "rock solid" and that she is doing great.  They should update us again soon.  Thanks again for all the support!  Keep prayin!

Ready to go!

This is It

Well they took her back right on schedule.  She is one BRAVE girl.
After a very restless night we arrived at the hospital at 5:45.  They checked us in and talked to us about pain and everything that would be going on.  We saw Dr. Lenke and his "fellow" (the doctor that assists him).  Dr. Lenke is such a caring doctor!
Danielle said, "I'm not really scared for the surgery.  It's after."  She was so wonderful and strong this morning.  We will hear from the operating room between 8:30 and 9:00 am this morning.
THANK YOU FOR ALL THE PRAYERS!

Senior Picture provided by Lura Landis Photography

Night Before Surgery

We left home around noon today and headed out for St. Louis. The roads were clear until we reached the outskirts of St. Louis. The last 30 miles the roads were snow covered. There wasn't much traffic and it was slow moving! Respecting the conditions thank goodness!  Danielle is really pretty calm. Just relaxing at the motel. I'm so nervous and am emotional. I am over whelmed by all the support!  Thank you so much!  We appreciate all your prayers. God is good! Below are pictures of what it looks like just outside our motel.

Ready or not.....

Packing and getting ready to go to St. Louis today.  I'm getting nervous.  I'm praying for so many things....the doctor and his staff, Danielle's health (she can't get sick before Tuesday), and her recovery just to mention a few.  We got a call from the hospital on Friday, we will report in at the hospital at 5:45 am. Her surgery is set for 7:30 am Tuesday the 7th. We will leave home at noon Monday (St. Louis is getting 10-12" of snow right now). Thanks for all your support and prayers, and please keep us in your prayers as we travel in the frigid cold.

Danielle's back 1-5-14