Wacky, Windy Wednesay

Today started SO much earlier than I had planned it would.  Julia was poking me at 4:30am to say she needed more water.  Then soon after to say she needed a new diaper.  Then she couldn't sleep because of the wind noise.  Then she wasn't tired anymore.  Needless to say, I did not plan on starting the day at 4:30, but now we had to roll with it.  We did fairly well for the first few hours getting ready and packing everything we would all need for the rest of the day.  By 9am, we were unraveling fast.  The kids were making each other nuts- still not exactly sure why.  When they weren't bickering they were finding trouble.  Where in the realm of the normal did throwing mommy's cell phone (twice) ever seem like a good idea?! After finally getting them to brush their teeth, put on shoes and coats, I decided it would be better if they went and got in their car seats while I grabbed the last minute items.

Simple enough, right?! Wrong.  Julia didn't want Carter walking in front of her in the car so she kicked him.  He in turn tried to bite her.  What?! Who are these kids? Apparently the gusting winds today have blown in some bad attitudes.  I settled that issue and left them buckled.  No sooner was I in the kitchen, Julia was screeching.  My mature mommy response? Screech right back at her from the kitchen.  Yes, it was not a shining mommy morning around here.  Just keepin' it real...

We were finally on the road at 9:30 and everyone was peaceful again.  Carter was actually singing the books of the New Testament and Julia was dancing while he sang.  I know it sounds crazy.  But it's true.  I have to confess I laughed at first.  This was SO not the snapshot of our morning, but a much better place to leave things.  We dropped off Carter and headed to Brenner's.  I was optimistic our day would improve.  I actually look forward to days like this with her because I have only one focus- Julia- and no other distractions or commitments.  Everything else just fades away.

We started in the GI clinic to meet with the PA about her chronic constipation.  I filled out all the paperwork.  It still catches my breath to see everything she's been through on paper.  After taking a quick history, she did a full exam on Julia.  She wanted to get an x-ray series to see what her bowels look like at the moment.  We went across the hall to radiology and were in and out in no time.  I always cringe because it seems some of the sickest kids we run into in the hospital are in radiology and they don't have their masks on! So those of us who are healthy and want to stay that way wear ours.  Then we headed back to the clinic and sat down to discuss the plan.

GI agrees with the oncologists.  Julia has had slowly worsening constipation issues throughout chemo.  It started to get bad when they had to increase her vincristine dosage (to almost double) because she had turned 3yrs old, therefore needing the child dose instead of toddler dose.  In response her intestinal tract muscles have lost their tone and her pelvic floor muscles are no longer functioning as they should.  So the plan? She starts bowel retraining tomorrow.  For the next three weeks she will receive miralax in everything she drinks.  They will x-ray her again in 2 weeks and if there are still problems they will add additional medications to the process.  Then we start with behavior and potty training.  That will be the harder part of it all.  We have a lot of control over the medicine she receives and very little control over her internal muscles and behaviors.  That will be up to her.  We are hoping with her age and typically cooperative nature she will be motivated to make all this work.

We had some time to kill before her next appointment, so we went up to the 9th floor to visit and so Julia could play in the playroom.  Then we headed to lunch in the cafeteria.  It is a great place to people watch.  Julia could not believe all the doctors, nurses, and med students in one place.  She was singing and performing for them as she ate.  She was so full of herself today.  We had a good time hanging out.

Then we headed over to the surgical part of the hospital.  Dr. Pranikoff was in surgery on a difficult case when we arrived.  We ended up being seen by one of his residents for her pre-op.  (Is it just me or do residents look like 13?) Everything looks great and they have decided to take her port out on Monday morning.  Dr. Turner came into to look over everything and sign off.  As of right now, it's a go.  They will call us over the weekend to confirm.  As we know from her last surgery, this is all up in the air based on the cases that come in overnight.  At this point we will go in at 6am Monday morning to meet with anesthesia.  She will receive general anesthesia and go into surgery around 7am.  They anticipate being able to pull it out using the same incision they made to put it in.  She was a riot while we were there making her new dog talk and interact with everyone.  Then she went back to singing.  The halls of the surgical clinic were filled with the sound of her singing/humming, whatever it was.  Everyone seemed to enjoy it and we left a lot of folks smiling.  It never ceases to amaze me on days like today she cries so much at home and sings constantly at the hospital- isn't it supposed to be the other way around?

She had time to play with her friends this afternoon which made her day.  Mommy was able to take a much needed nap (thanks Annmarie!) to get through the rest of the day (she even fed us all dinner).  Julia never made it to Awana.  She ended up crashing in the car around 6pm.  I brought her home for a quick shower, snack, and stories, and she is off to dreamland- hopefully for a good night's sleep- for all of us.

So only one week left of mask-wearing and avoiding germs.  Hard to believe! God has been so good to us this winter.  She has not had so much as a sniffle since her last hospitalization in October! That will never cease to amaze me.  Only God.  Her little world is about to get a whole lot bigger.  I'm so excited to see her be able to enjoy the simple pleasures of life again and just enjoy being three.