I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, March 17, 2016

Life With A New Tube

On February 26th Alex had her surgery to have her cecostomy tube placed. 

In a nutshell a tube called a chait tube was surgically placed into Alex's cecum, which is located at the beginning of the large intestine. 

Every day we run a saline solution through the chait tube which bypasses the small intestine and basically forces any stool through her large intestine so it can't "back up" and cause all of the constipation issues she was having.

The chait tube looks like this:

The long spiral stretches out into her large intestine when the saline is administered.  

We typically call Alex "Allie Bean The Beauty Queen" - a nickname my sister lovingly gave her that stuck - so the morning of her procedure she wore her tiara like any queen would.

We've been through a LOT in Alex's 14 years so I'm not sure why this surgery hit me so hard and had such an effect on me emotionally, but it did.  I couldn't talk about it without crying - I couldn't talk about her without crying.  If I think about it now in retrospect I think it's because I'm still a little bitter that she had to have the surgery in the first place because I think it's just so unfair with everything else she has to deal with, but secondly, she was hurting.  In the past surgeries were done out of necessity but not necessarily because she was in pain so this was different.  And the sad truth is I really thought as Alex got older the easier things would get, but with everything we have been through in the last year I'm realizing it's the complete opposite.  

The surgery itself was less than an hour and a half - and we were able to be with her in PACU before she woke up so she wasn't scared - I loved that we could be there to comfort her the minute she woke up.

By 4:00 that afternoon things started to get rough and Alex just cried.  She couldn't get comfortable and despite all the pain meds she had on board she was miserable.  She moaned the ENTIRE night, never closing her eyes to sleep.  By the time she had been awake for over 24 hours she was a complete zombie.

The surgeon came in to see her and wanted her to spend another night because her stomach was more distended than he had hoped it would be and she was still crying and moaning so he wanted to see her more comfortable.  By 8PM that night she had been awake for over 30 hours, me over 40 and I knew there was no way we could make it through another night at the hospital so we opted to take her home.  I told the nurse this wasn't my first rodeo with her and that I promised I would bring her back if she showed any signs of infection (she had been on an IV antibiotic for 24 hours) or if she wasn't comfortable once we got her home in her own bed.  We got her home and settled in her own bed - and she slept 12 nice and long solid hours.  Momma knows best.  (Well, actually Daddy knows best, he started the push to take her home).

Anytime someone has intestinal surgery they get them up and walking almost immediately to alleviate the air that has accumulated.  Not so easy with Alex.  When she got up the following morning her stomach was still distended so we got her into her walker to see if moving around would help alleviate that - and it did.  

Day 3 post-op, up walking, and back to her happy self.  She amazes me.  She inspires me.  Truly.

So, this is what our belly looks like now.  2 tubes.  I still despise the tube and it's constant reminder, but it has made a huge difference for her and she is SO much more comfortable so for that I am thankful.  

And probably the MOST exciting news and silver lining to my cloud is that for the first time in FOURTEEN years my big girl has been able to use the potty!!!!!!!  And the best part about it is she loves going into her bathroom - she gets so excited - and we make a REALLY big deal about everything that happens in there!  We are going to try and time train her over the summer and see if we can make it a permanent thing - but once we run the saline through her tube we can pretty much time the time it will take for her to do her thing so.....
I couldn't resist - look at that face!
 So now it's onward and upward.  We'll take this, like everything else we've dealt with and make the best of it.  Bathroom parties every day - there could be worse things, right?!?