Tues Appt; Out of Denial

Today J has a follow up appointment.  We have lots of questions.  Mainly...she is having frequent headaches that are getting more frequent.  It isn't her eyes, or her blood pressure.  We took her to the pediatrician yesterday because she felt bad...chills and body aches...also sore throat.  Everything checked out OK, and she did not have strep.  I've been giving her extra strength tylenol for her headaches. 

Also, she is having these popping sensations in her back.  Almost like "let down" feeling or like her spine is settling.  It happens when she is sitting absolutely still.  Very strange.  We are checking into that as well.  

I'm taking my camera...hope to get photos of her X-rays.  I've been wanting to get those to post!

Well, I've come out of the land of denial about my eyesight going bad.  Several yrs ago I had lasik surgery.  It was so wonderful for me...who was "legally blind"...seriously, blind as a bat!  The eye Dr. told me that once I turned 40 yrs I'd probably need reader glasses.  Well, I'm 41...and for about a yr now I've noticed having issues with seeing close up.  Especially with reading text, my eyes have been buggin' out!  

So while I was home this past weekend, my sister in law gave me a pair of her $1 Target reader glasses.  (she has a pair for every outfit...lol...just kidding, but she did have like 3 pair!)  It was nice of her to share. ;)  I broke down and admitted that I really do need them.  They are a low prescription...like 1.25 or something like that, but really make a huge difference.  Anyway, my eyes are much happier for it!  

So Yeah, I'm getting old and I see a gray hair shining on this photo as I type this!!!  

Reader glasses $1 at Target, being blind when you are a photographer...priceless!!!

Venturing Out!

This weekend J wanted to venture out and do some small road trips. Our guys went out of town to do something called Passport2Purity...of which I will be writing more on a little later. They left about lunchtime on Sat. So J said...Mom, can we go out and shop?

So we did, and we found her several items for spring.

We piddled around at Goodwill...our favorite store! And, Ross...another favorite! We were out for about 2 hours, and I kept asking her if she was ready to go back, and she kept saying...no, I'm feeling great and having fun. She had NO pain while we were out!

Then, last night she went to youth group. I accompanied her, and she did great! She was a little apprehensive about it, yet everyone was so welcoming of her. That helped her feel more at ease.

We have to be extra careful though, because she cannot bend, twist or lift...she is restricted with her physical activity for 6 months! This seems like a long time, but it will go by faster than we think. Until then we must be extra cautious for her 12 fusions to heal properly.

Well, my blog is short today...Josh got his iPod Touch from Fed Ex this morning (he pulled together all of his birthday money to get this thing! - boys and their toys!), and he wants to get it plugged into his itunes to charge...then we are getting onto our school lessons! Thank you Aunt Beth for ordering it for us! He wants to give a special thanks to Uncle Doug, Aunt Beth, Grandpa Roger and Nana for the money towards it for his birthday!

Hope everyone has a beautiful day!

Post Op, the 3.5 Week Mark!

J is doing so very, very well! :-D

She had her first post op appt this morning, and the surgeon is quite pleased. She has lost 7 lbs since her last visit, and gained one inch height. (We measured a two inch increase...but she is definitely much taller to us!)

The doc said her incision has "sealed" so clean and nice, and no need to bandage it up anymore. The steri strips are still perfectly intact. He told us that we can peel them off, or leave them.

My extremely "sensitive skinned girl" opted to leave them on. She is even a little wigged out about not having the extra protection of the bandaging on her back. She doesn't feel comfortable now flat on her back because it feels so weird to her not having the padding of the dressings there.

New x-rays of her back were taken this morning to compare to the old pre surgery x-rays. He showed us the difference, and Wow, a lot of hardware in there! There was one shot of her from the side, and all of those long screws looked like they were taking up half of her body!! He said they should not bother her...but man, there are 15 of those big ol' screws in there!!!

These are photos of another gal on flickr who had the same type of surgery J had. Her photos/x-rays looks almost identical to what my j's looked like this morning. Except, J's rods go down longer about two more vertebrae down to L3, whereas this girls stops at L1. So I thought some of you medically inclined folks would like to see. I've ordered x-rays of J's, and will post those once I get them. Until then, this one is pretty darned close to the same:




photos of above taken by darcimanley's photostream:

J's surgeon was amazed at how well she was doing.

She has restrictions for quite some time. No bending, twisting, lifting, or rigorous physical activity of anything much...for 6 months! Even when she swims, he just wants her to paddle around, no major swimming of laps such as freestyle or swimming of laps for at least 6 months!

Since she had 12 fusion, those must heal properly so that her back will not try to begin bending again. If the fusions do not heal properly, her spine could even begin bending the rods...so the fusions healing properly are total key! The titanium rods are softer than stainless steel (she had to have titanium due to her metal allergies) She will need to be EXTRA cautious concerning her restrictions.

I've already given brother, aka the Bubb, the whole run down again...no bumping up into her or pulling on her...no rough housing of ANY kind! It could mean big trouble for J if things get knocked outta whack.

We are so thankful to God, and to you all for your prayers, love and support of our family.

God's healing power is so amazing!!! Please keep those prayers coming. The fusions are still healing, and we welcome continued prayer concerning this too.

Not For Weak Stomachs...J's Incision Photos!

Man, this first one is waaayyyy out of focus. Too bad... I took them quickly. :)

These were taken 2 days ago. She is healing beautifully!




And after my type A wound dressing capabilities...

Stomach Pains

Well, I'll start out with some GOOD news! Jordan slept through the night without getting up ONCE for pain meds. or to pee! :)

However, at 5:30 am, she woke up needing pain meds. Right after giving her the pain pill, she began having an itch attack on her back. (I think it is from her back doing so much healing...or it could even be from the tape adhesives drying her skin out.)

So, I gave her an anti-itch pill. Within 30 mins after that, she felt sick on her stomach. She had stomach pains and nausea. I'm thinking it could be from taking the pills on an empty stomach. Yet, she has done this many times during the night when needing a pain pill or anti-itch pill, and it never made her sick before. Also, I'm not ruling out the dreaded menstrual cramps. The day after Christmas she "started" and hasn't had another since her surgery. So....it could very well be this too.

I finally got her settled downstairs in our chair and 1/2 recliner...with pillows behind her and all around her. It is 7:15ish and she has finally drifted back to sleep, after 2 hrs of going back and forth to the bathroom feeling sick with stomach pains. I'm so glad she is resting now...bless her little heart!

She is really getting around well though, but I have still noticed her breathing to be a little short and choppy at times. I'm looking forward to seeing what the sleep study results will show.

Ut Oh, she is moving and moaning...better go check on her...

Breathe Steady; Sleep Study

This is how I coached J this morning: Woog, slow down and breath steady...even if you can't take in a deep breath yet...just BREATHE steady and slow. She panics when she cannot get in a deep breath, then she works her way into hyperventilating and crying altogether.

Ever since she had the deflated lower part of her left lung after surgery, if she goes too long laying, she can easily slip back into the shortness of breath mode.

This weekend she wanted to lay a lot, and sleep a lot. I had to make her sit up, and walk. Usually she is telling me that she wants to get up. I think all of the weeks activities that we did...walking, coloring and sitting up more...took a tole on her. She just wanted to rest a lot this weekend, and had more back pain. Yet, it ends up causing her breathing issues to relapse because I let her sleep through times when she needs to be doing breathing exercises.

I told her today that we have to keep up the breathing exercises...even if that means I have to wake her from a nap. Which I had to do because I know she needs her sleep. We just do not want to risk anything with that weaker lung.

We went for a nice walk outside this morning after breakfast. The temperature outside is much warmer and sunnier than it has been. She enjoyed being outside too. We saw our very sweet neighbor and her two young children. We had a short talk with them. She really encouraged J by telling her how wonderful she looked, and how great she is doing with recovery! This gave Woog a smile.

It will be so nice when it really warms up, and we can all get into the swimming pool. I think she will find it so relaxing in the water.

We are entering week three post-op. J's follow up/post-op appointment with the pediatric scoliosis surgeon is on Feb. 17th. That will be next Tues and the 3.5 mark for her.

OH, I don't know if I mentioned this before. While we were in the hospital, (and when the nurses were watching J's oxygen and breathing), J kept having issues where she was holding her breath a lot. This concerned the ICU Dr. (who is actually over the whole Peds unit) He said she is showing strong signs of sleep apnea. Therefore he put us in contact with the sleep study physician, who set her up to have a sleep study on Feb 27th. That is, if she is able to do this with her spine recovery. If she is still on the pain medications, they may want to wait until she is completely off of them.

I'll keep you posted on this too. :)

David and I are also going to set up sleep studies for ourselves. Ever since I was young, I used to hold my breath in my sleep. I remember being at the beach with my friend Leigh Anne and a few other friends, and she told me they had to shake me to wake me up to breathe, because I was not breathing at times and if freaked them out. (Do you remember that Leigh Anne??) Well, I still do this, and that is not a good thing for my heart. David also does this. Plus he snores terribly and holds his breath. So we are going in for sleep studies. :)

Bubb is the healthy horse of our family. ;) Aside from his ADHD, he is doing well, and he does not snore either. heehee!

Cutting Back

Well, today (Fri) we completed the two weeks post op milestone for J!

She is getting around very well, and using the walker less. She still uses it for outside walks due to feeling a little nervous that she might trip or stumble. We also use the gait belt for going up and down the stairs. She is pretty much walking freely upstairs, and downstairs...it is just doing the actual climbing up and down the stairs where she still needs assistance.

I can hardly believe how well she is doing! Thank you Lord!

Yet, she is still having pain...Especially in her shoulder blades. Which is to be expected after such a major surgery.

Last week we had to increase her pain meds to 2 pills every 6 hrs, instead of 1. The 1 pill wasn't cutting the pain. So, after increasing to the 2, she was able to relax better. I think this has helped her heal better too. That, and taking frequent short walks, and sitting up 30-45 mins at a time. I was having her sit up a little too long before, and I think that was putting too much strain on her back. So, we cut back the sitting up time by about 15-20 mins, and added more short walks instead.

She does sit up at the dining table with us for at least two meals of the day, and to do creative things such as color or write notes. Since she is sitting up for 30 mins at a time, we are going to try some school next week and see how it goes. The up and down for lessons will be good for her too...will have her moving more. I'll keep lessons short...15-30 mins at a time, and some breaks in between for her to rest. I think this should work.

I'm still not comfortable leaving her for any amount of time. She still needs my assistance for using the bathroom, and we are still using the chairside commode (it also goes over a regular commode but has handles to help her lower herself, and it is a little higher sitting area too)

Yesterday it seems she was going longer before needing her meds. Therefore I cut her back to 1 pill every 6 to 8 hrs as needed. She is still complaining of pain and I pray that one day she will wake up and her pain will be so minimal or completely GONE! That would be such a blessing because I hate seeing her in pain. She never complains much unless it is getting really unbearable.

We've been watching movies together during her recovery and having a lot of mother/daughter time. Yesterday we watched the movie Fireproof. It was really good, and hope that David and I will be able to watch it together tomorrow afternoon. :) If you haven't already seen it, I recommend it!


Bubb and Woog before her surgery...love seeing these smiles!

Our Days

Here is what our typical day at home has been like so far.

11 pm night before...up for a pain pill and to roll J. Do breathing exercises.

4 am- j gets up feeling uncomfortable. Her pain meds usually beginning to wear off so I talk her through the next hour, roll her into a more comfortable position. We do breathing exercises.

5:15 am- j wakes up hurting and sometimes needs to use the bathroom either now or at the 4 am awakening. If so, I spot her to sitting up, and she uses the chairside commode (I put it in the bedroom at night since she is sleepy and on pain meds...she won't have to walk as far in the middle of the night until she gets stronger) Then I dump the bucket and clean it thoroughly. I wash my hands (as I do hundreds of times a day) I give her next dose of pain meds with water I have by the bedside. Breathing exercises

7:30 am - I get up and see David off. Do a little blogging and catching up on emails. Throw a load of laundry in and fold a load. Do breathing exercises with J.

8 or 9- J gets up needing to pee. It is a slow process getting her rolled and sitting up. She is usually afraid of the pain after getting up once in the night her shoulders hurt. So while she is laying on the side of bed getting mustering up the courage, I take the chairside commode back into the bathroom and set it up. Then I spot her up and walk her to potty. We do breathing exercises.

9:30 ish We walk around the upstairs. She checks out her room. She sits on potty while she decides if she wants to do breakfast first or shower first. Today it was shower. So....I get her towels and gown together for a shower while she is on the bedside commode (seat down of course).

9:45-10:15 - Shower and redressing wound. It takes 4 towels and one washcloth. I keep everything we use washed every day. One towel for hair, one to go around back/shoulders when she gets out of shower, one towel to put over the chairside commode for her to sit in while I dry her hair, and one towel I use to dry her with. Whew! I have her stand holding a rail while I remove her incision dressing/bandage. I help her into the shower, wash her from head to toe. Afterwards I cover her hair, and wrap a warm towel around her shoulders. Then she steps out and I dry from waist down. She then sits on a towel covered chairside commode for me to finish drying her upper body and hair. I put on her bottoms and walk her to the bedroom with a towel around her top half. She sits on the side of the bed, and I put a gown over her head and arms in, but keep the backside up to redress her wound. She lays down and does one log roll to the left so i can get to her backside. I spend a good amount of time re-dressing her wound. First I use an adhesive removing pad to get all of the previous sticky off. Then rub around the outer edge of the incision with alcohol pads to clean lightly. I carefully redress her and use surgical pads and paper tape. I rub her down with baby lotion to keep her skin from getting dry and itchy. (which for those who have asked and sry I haven't gotten back to you...her rash is completely gone! YAY!!!) I log roll her back and forth to get her gown back down and tuck pillows everywhere she needs them...cover her...off to fix breakfast.

By this time I have a stack of dirty cloths at the top of stairs of wet towels, her old gown, and brothers's dirty cloths from yesterday. I wake Bubb and ask him what he wants for breakfast. Today we all agreed on bagels with butter, vanilla yogurt, orange juice and milk. I carry down all cups we used the night before, and laundry. I switch out the laundry and put another load in. I quickly fold the load from the switch out.

I toast the bagels, pour the juice and make the choc milk for Josh. I recruit Josh to help me carry everything upstairs. I get the chairside commode (it is the only thing she is comfortable sitting in b/c it has arms) I cover it with a clean towel and lay down a towel underneath. Set up a tv tray for her. I set up a folding chair and table for Josh to eat with her. I stand to eat b/c it just feels better! :)

10:45 After breakfast it is about time for her meds again at 11:15 am. We walk some more and she explores a bit in her bedroom and around the upstairs. We do breathing exercises! ;)

11:15 While she is sitting up, I give her pain pills and then we brush her teeth. I help her back into bed (she can only sit upright 30-45 mins at a time). She turns on Ellen while she drifts in and out of a nap. During this time I am cleaning up breakfast and folding laundry. Brother spends time with J. as I clean. I put chairside commode back into the bathroom.

12 - David comes home for lunch. He eats lunch and we talk a bit. I put on a pot roast in the crock pot. Then we all go upstairs to be with J until daddy goes back to work. Sometimes J is up during this time and wants to walk a bit downstairs. If so, I carry down the chairside commode, or if dad is here I ask him to carry it down for me. This morning she did not walk down the stairs until after Daddy left. So I had to carry the chairside commode down, then go back upstairs to put on her gait belt and walk her down the stairs.

1 - Woog and Bubb are hungry for lunch. I get J set up at the dinner table. The barstools are perfect for her to sit in b/c they are high and she doesn't have to squat so far down to sit. I fix lunch for us all, and Bubb helps me pass out the food and drinks. J talks about wanting to work on thank you notes. So after lunch I sit her up in the recliner chair with lots of pillows. Bubb and I color together in a Wall-E coloring book while J works on writing, and we all listen to a book on tape together. (I made the decision after J has a few bad days these past days to just take it easy on us all this week and go ahead and take our 3 weeks off that we normally take in the spring. We homeschool yr round.) I did do some school with Bubb on Monday. We are going to start back on the 16th and by then J should be MUCH better! Breathing exercises!

3- J's back is hurting from sitting a little too long. So we do some walking downstairs (it was raining/cold today so no walking outside), I get her fresh ice water. Bubb carries the water up while I assist J up the stairs. Breathing exercises, I lay her down, get her settled, and currently I am blogging this! :)

4-5 Today I'll put in the potatoes. Fold 2 more loads of laundry, then lay with J for about 15 mins rub her head and/or take her to potty if needed. Then Dad is home!

5:15 - Pain Meds for Woog and more water or white grape juice. Breathing exercises

5:30 - Dad tells us about his day, and we talk about when we will eat dinner. Tonight he and Bubb are going out after dinner together for father/son time ride in the car to pick up a movie at Blockbuster.

6ish- We get J up for more short walking and for dinner. If she does not feel like walking down the stairs again, I set her dinner tray up in our room upstairs. Josh wants to eat with her too...so I set him up a tray. (Sometimes she can do the stairs twice a day, and sometimes not. We have 15 stairs...one flight...and she really is doing them 1 wk earlier than they thought she could. So I don't push her.) After she eats, we walk to the bathroom and she brushes her teeth.

7:30ish J is ready to lay down again. But first...yep...breathing exercises!

9- J usually has to potty. We get her up for a short walk and to sit up for 30mins or so. We do the breathing thing!

9:3-10 She is tucked into bad and watching a movie or something on TV. Tonight it will be American Idol, so she will be in bed by 8 PM for this! And she will get up inbetween for a potty break at 9 pm.

We don't get to sleep until about 11:15, after her next dose of pain meds. By then her shoulder blades and back are hurting terribly! She describes her should blades as feeling like they are burning through her skin. She cries, and I cry with her and keep pushing her to not give up. Each day it gets a little better. We do breathing at this time too! And the cycle continues...

Every hour-2 hours we do the breathing exercises. :) In between these times I work in one on one time with Bubb.

That is the day in the life of J and co. for this week. ;)