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. ;)