My Family

My Family

Monday, March 17, 2014

Cheat Sheet

I have always promised to be honest in the blog.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.

Tuesday, March 4, 2014

The Tube and I

It has been a super challenging week.  And a hard one.  When your child goes in for surgery it is expected to be stressful as is but we had a lot of nasty surprises along the way.

We went in last Wednesday.  Because Cary has DI she needs fluids and extra is always good so we checked in to casa VCU medical center in the morning and hooked her up.  Surgery was scheduled for about 9:30am Thursday.  No biggie right?

Well, it started going down hill pretty quick.  We were bumped and told that we were the third instead of second on the docket.  No big deal.  But the surgery that was supposed to happen early in the morning didn't happen until about 6 at night.  When your child has an underlying condition (DI or anything else) the more you keep them off their schedule the wonkier they get.  Even with an IV Cary was wilting.  All I kept getting was an I'm so sorry swan song, but no results or action.

Then there was the "training".  The gi surgery nurse came in and announced that she was going to be my new best friend.  Cary was screaming and she told me that she was here to show me the ropes. I asked if she could show me after the surgery since Cary was a mess, I was stressed out, and Cary had no tube in her to practice on.  The nurse assured me she would be back later to show me the ropes and spent 3 minutes naming the parts and what they did and buzzed on out.  OK.

We did make surgery.  We made it through surgery.  And now my daughter has some new hardware.

This is the tube several days post-op.  She has some extra stitchery.  They inserted a camera through her belly button and placed it in.  It has two areas.  The top is where you put the food in and once the stitch that holds it in place is removed I shall be able to burp or vent extra air through the tube.  Fun for all.  The bottom hole is where you insert water to hold the balloon in place that anchors it in.  If your balloon pops or deflates you need to have pretty quick reflexes to save the day.  Let's hope for Cary's sake that that doesn't happen anytime soon.  

Now there is also the outer extras that help with the process.  

On your left is a Ferrel bag.  This helps "vent" Cary Lynn.  She is hooked up to this 24/7 for the time being.  On the right is the feeder bag where I place her pediasure and water.  Below is the pump which puts it all in her.  It is not a great pump, but hey at least I had it on hand.

Here is the tubing and that little orange tip is the Ferrel bag.  It attaches to the port.  Cary has more clamps, attachments, and gadgets than my DVR player.  I have been calling her my little robot.

I will have to say that this has all been a nightmare.  When the surgery was done the floor nurses insisted that the gi nurse train me.  The gi nurse insisted that the floor nurses train me. So I ended up watching a lot of You Tube videos and got a nurse who spent a few minutes with me.

Then there was the fact that no one thought that I might need supplies.  Thankfully, I have some awesome tubie mamas who stepped up to the plate.  The mama I got supplies from even bought my kids webkins which they love!  Cary Lynn has been toting her pink poodle with her everywhere.  After spending 45 minutes on the phone with my supply company today I will have some supplies for my daughter.  Some are back ordered (like seriously, how do you run out of gauze?), but we are making progress.  The sad part is that I got Tupperware from my cousin's party in Minnesota before I can get medical supplies for my daughter on the other side of town.

Then there was the nurse that I was supposed to get.  Yes, when you get extra gadgets on your child you are supposed to get a home health nurse come out and check on you so you aren't tubing your child's ear.  I'm not by the way:).  I am having trouble remembering to unclamp Cary so she "flows" but at least I am mostly getting stuff in the right spot:).  So once again the nurses are playing a game of its not my job.  But once I called my feeding program and explained that Cary was dropping weight due to how the drs and nurses and hospital nutrition were handling the feeds.  I now have feeding looking into a nurse for me and promises of nutrition support.  I know K.  She will deliver.

It was tough.  My floor Dr was a student and really green behind the ears.  He didn't understand complex kids.  VCU isn't my favorite place.  There are a few Drs and nurses that I love love love.  However, most of the time the right hand doesn't know what the left hand is doing.  It can be really scary at times.

But we pulled through.  I have support.  I have a community of parent with SN kids that I can call in a flap 24/7.  And trust me, I have been in a flap quite a bit lately.  I know I will get it. But I also know that I can be a big time spaz and little things can freak me out quite easily. Ask my husband and Cary's nurse.  Although, her nurse claims I have gotten a lot better.  So does my husband:).

Am I thankful that I did this?  All of Cary's specialists claim I will be thankful.  So do most of her therapists.  The truth is I'm not thankful.  I wish she didn't need this.  But she does.  Cary Lynn has lived through a lot.  Her body betrays her daily.  I see her silent struggles to do things.  I see her try super hard to make her body do what her mind wants it to do.  But her body at times acts independently of her mind.  It can't always eat well, chew well or take in enough nutrients to thrive.  That's why we have a g-tube.  It was a road I didn't (and still don't) want to travel.  But we are walking down that road now so I have to make the best of it.  I will adjust.  I always do.  And so does Cary.  We are both survivors.  And we are both blessed to have a lot of love and support.  For now that is enough to keep us both in the fight.