The countdown begins

We're taking it one day at a time over here.  Otherwise I think I'd be trying to hide somewhere.  

Here's the run down for the next few days.

Today (Mon):  at 4:00 we are supposed to give him 17g of Miralax and a light supper.  (See the little black marker line at the bottom of the cup?!! That's how much we normally give him at breakfast and supper.)  Then at 8:00 pm we are to give him ANOTHER CAP FULL!

Let's just say... this will be interesting.

Tomorrow morning (Tue):  ANOTHER CAP FULL at breakfast in clear liquids.  Owen can only have clear liquids all day Tuesday.  Popsicles and Jello are okay.  (That's great, except somebody I know doesn't like Jello and Popsicles.)  And yet ANOTHER CAP FULL at supper time.  

A friend thoughtfully invited Eric and the kids over for supper Tuesday night so Owen doesn't have to watch them eat.  Planning on using the iPad to distract him while they eat breakfast and lunch.

Let's just say... this should be interesting!

My mom is coming up that night to get the run down on what the other kids need this week.  She'll be staying with them here for a few days, then taking them down to her house next week to see their cousins from MN.

Wednesday: We are to check into admitting anytime between 8 and 10:00 AM.  I'll probably shoot to leave around 7:00.

I'm not sure what all they'll do in-patient that day.  They say they'll "make sure he's running clear."  (Um, I'm pretty sure that won't be a problem after all that Miralax!) We'll hang out in his room all day.

Eric will come down Wednesday evening after work and stay the night.

We won't know surgery time on Thursday until the pre-op nurse calls (hopefully today or tomorrow) I'll keep you posted.

Thursday, The big surgery day:  Eric's parents, our pastor and a friend are coming down to sit with us.  So we'll have lots of distractions.  I'll take my computer and keep you posted.  The surgery nurse usually comes out every hour or so to update us on progress.  I'm hoping this takes closer to 8 hours than 10, but we'll just have to see.

I don't know a lot of details about what will happen next, but I do know he will be going back on the floor, not the PICU, which is good.  

I know he'll be on IV nutrition for a few days until his bowels "wake up."  He'll have an NG tube (naso gastric feeding tube) down his nose.  Not for feeding but to suck out stomach secretions. Absolutely nothing can go through his intestines for a while I guess.  He is not going to like that, but I know he'll be pretty sleepy and doped up on pain meds, so that should help.  

I know he'll have catheters and drains coming out of each of the stoma sites.  (the catheters will stay in for 6 weeks)

I know he'll have a supra pubic (SP) drain in his lower abdomen that will drain urine from his bladder constantly. This will stay in for 6 weeks as well, maybe longer.  It is an emergency outlet to relieve bladder pressure in case cathing through the stoma is not working.

One nurse told me he might have another drain for the procedure they do to tighten the urethra/bladder neck.  I keep getting conflicting info on this, so I guess we'll wait and see.

I know the incision will be fairly long, up and down his whole abdomen.  I don't think I want to know how many internal stitches he'll have.  

I know they may need to give him Ditropan or something similar temporarily if he has painful bladder spasms as his body adjusts. 

So that's what I know.   I know there is a lot I don't know.  And that's probably a good thing.  

One step at a time.

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a hard stick

I need to remember to ask them to maybe put in a second IV port just in case one has issues.  He's such a hard stick.  His blood draw Tuesday was just awful.  They couldn't find the vein.  "Like chasing a thread" she said.  Just kept poking him.  Ended up doing a finger prick.  

Had to re-do the blood draw on Friday because his blood work came back a little off. (found out later it was probably because it had started to clot—likely because it took so long to collect it from his little finger.)  Thankfully, the local nurse got the vein on the first try!  I told her I want to take her with me everywhere!  

All that to say, that if his only source of nutrition is via IV for several days, as well as meds, I want to be sure we have access and don't have to poke him more than necessary.

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Talking with the kids

This morning I sat at the breakfast table and drew the kids a little calendar of what would be happening this week.  Asked them if they had any questions about the surgery or what was going to happen.

It is so hard to know how to handle this with each of the kids.  How much info is too much, not enough?  Is it more scary to know or not know what is going on?  

This is where that sibling panel at conference was so helpful.  They said it when they were little they didn't really want to know all the details.  But when they asked questions they wanted simple honest answers.  And they knew when their parents were lying. 

Keep it simple. Be honest. check.

Praying for wisdom in this area constantly.  

Kate asked what was this surgery gonna do.  I reminded them about how Owen's body doesn't tell him when he needs to potty and that's why he wears a diaper and that this surgery will help him be able to wear underpants just like them in a few months.  

Liam said, "Oh, so he'll have to go through training like Zane?" 

"Not really, buddy.  It will just take his body a while to heal and get used to things. but then he'll wear underware like you in a few months!"  trying to keep this upbeat.

We talked a little about the incision Owen will have. (because obviously they will see it when they visit him and when he gets home.  I'm all about introducing this stuff in small doses.) 

Kate asked "what's an incision?"  

"It's where the doctors do the surgery." I point to where it will be on my stomach "It will be sore when he comes home, kind of like when you have an owie on your knee and hit hurts when you bend it or touch it."

We talked about how Owen won't feel the surgery or remember the surgery because he will be sleeping—a special kind of sleep called anesthesia.  "Both Liam and Kate have had anesthesia before too, and you don't even remember it do you?"

We went over the calendar again and I showed them when Daddy would bring them down to visit Owen.

They seemed satisfied with this info and not fazed by it a bit.  They are very excited about having a 4 day sleepover at Grandma and Grandpa's house with their cousins more than anything.  And of course for Swiss Days (I mean, who wouldn't be?!!)

Praying God guards their hearts and their minds. There's no handbook for this!

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OWEN

Owen on the other hand is a whole other thing.   It is so hard to know what he's thinking and what he understands.  

Last week he was super emotional.  Crying a lot on Friday. Just wanting me to hold him and not leave him to do anything else.  

Several times last week he said something like, "I don't want a big hole in my tummy!  I will tell the doctor NO NO!"  complete with angry face.  

first time he said that I wasn't sure I heard him right.

We talked about how it was actually two tiny stomas just like his g-tube spot.  and he will be able to cath in them and use the potty and wear underpants.  

The second time I was sure.  and concerned about how vehemently he did NOT want to do this.

I told him I wasn't looking forward to it either, but we would just have to make the best of it.  Mommy will be with him the whole time and we will watch movies and read books and he can play iPad.

"And play with Molly?!" (the train from tethered cord surgery)  

"Yes, and play with Molly."

Oh, how are we going to do this?!!!  How can we make him go through all this?!!!  This is not fun.

it will be by Go'd grace.  for sure.

One thing at a time. breathe

This week is better.  It must be the prayers!  He has been so happy.  I had a really really nice time with him yesterday just talking and being silly and snuggling.  In a way I am looking forward to spending so much time with him one on one in the hospital.  And this morning we had a silly fun time working on dressing himself.  He is such a goofy boy and I love him to bits.

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Clarification

I wanted to re-explain the outcome / reason for this surgery.  

Normally, surgery "fixes" something or makes things "normal", so one would easily assume that this surgery will make Owen's body work like everybody else's.  That he'll be able to use the bathroom by himself, won't have to cath anymore, etc etc.

That is not the case.  I say a lot these surgeries will "make him continent and offer him future independence." 

 And by that I mean, we will do a different bowel program than we do now, flushing his bowels from the top down.  But he'll still do a bowel program.  He won't be able to feel the need to go nor control it any more than he can now.   

We will cath on a MORE rigid schedule through a stoma instead of the urethra.   And when I say "will"  I mean like in 7 weeks from now. 

By "future independence" I mean in the next year we will work on getting him to help us do these processes.  It will be several (or many) years before he will be able to perform all these tasks ON HIS OWN without help and without being reminded. 

But THAT is the GOAL!  Independence, baby!

This is long-term thinking.  Long-term quality of life stuff.  Long term social freedom.

In the short term it's gonna suck.  I'm not gonna lie.   Right now we have a pretty lax cathing schedule.  He leaks all the time so there is not much worry about high bladder pressures or harm to his kidneys.  He has never ever had a UTI (which is frankly unbelievable btw) and so really all we're doing is removing the residual urine to prevent one.  It's pretty nice.  We just don't stress about cathing.

That's gonna change for a while.  I know we'll figure out a comfortable schedule eventually, but in the short term this is a big life-style change for our family and a new mind-set to get into.  If no urine can leak out, it will be very important for us to empty his bladder by cathing in a timely manner.  Does that make sense?

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Over sharing?

Sometimes I wonder how much is too much to share on here about something as personal as bowel movements. 

Here's where I land right now...   

For now I think the benefit to others facing these same issues too is huge.  I know I've been thankful to learn from others' experiences before we go through them.  I will not discount that.

I also think it is helpful to people to whom this is all very foreign and don't know what people with spina bifida (or anybody with a spinal cord injury for that matter) have to deal with.  I think it fosters understanding and compassion.  Those are good things.

I know there will come a time when Owen may feel uncomfortable with me sharing stuff and when that day comes I will respect that.  He may kill me later for sharing this stuff now, but hopefully he too will see the value in helping people, giving hope, building an understanding community and informing our friends and family how to pray.  Those are all good things.

so for now I share.

sorrry if its' TMI!

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Thank you for your prayers!!