Wednesday, April 9, 2014

WAGR Wednesdays~Expect the Unexpected

As I sit here in my recliner, with coffee in my hand and cats on my lap..(well, the coffee isn't in my hand right now; that would make typing too difficult), it makes sense to me that I should write about the many times that I have been caught "off guard" regarding some of the difficulties of WAGR, or the resulting health conditions.  I've decided, however, to just write about the most recent...

Evie just had her atrial septal defect repaired (a hole in her heart that never fully closed).  While ASDs use to require open-heart surgery, they are now repaired with cardiac catheterization.  From the written description and verbal descriptions of the procedure that I received, I was expecting that Evie would have a 3 hour procedure during which a catheter would be used to access her heart through a vein in her leg.  She would be left sedated for most of the afternoon, as a four hour period would be required to allow the vein in her leg to seal back up.  The literature says that, often, if the procedure were diagnostic, the patient could go home the same day; if the procedure was performed to place a device (which was our case) the patient would stay overnight for observation.  Pain is not typically reported by patients, except maybe for a discomfort in the access area.  Patients can usually go back to school the day after returning from the hospital with restrictions in Physical Education class and recess for about a week.
I'm thinking:  This will be a breeze!
I told Evie:  You'll be asleep during the procedure and then we get to have a sleep over at the hospital.
I pictured:  Having dinner, watching TV, playing cards, doing Madlibs and reading books.
Here is what we actually got: 

Expect the Unexpected
A vein that did not "seal up" as quickly as they anticipated.  Five hours after Evie returned to her recovery room, we slowly got her up and out of bed as she had indicated she needed to use the bathroom.  We took a few steps toward the door with her and the nurse said, "Whoop, whoop, let's go back."  I looked down and saw the blood dripping on the floor, streaking down her leg and staining her white sock.  We walked her back a few steps and got her on the bed...laid her back quickly and I put my hand over her gown where the access area was.  I held pressure on there until the nurse came back with more help. 

I knew it just required more time, more pressure, and that it wasn't life threatening; but I also knew that this would set us back.  She wouldn't be able to use the bathroom like normal, and she had to go.  Our two options, after the bleeding stopped, would be a bedpan, or a catheter.  I did NOT want her to have to use a catheter; especially since she was AWAKE!

After 30 minutes of the nurse holding pressure on her leg, switching from the bloody gown to a clean gown, and wiping up the remnants of a scene out of ER or Greys Anatomy, we were ready to try the bedpan.  Nope, no luck.  Evie couldn't get herself to "let it go." 
Expect the Unexpected
With the additional time in recovery after the "incident" (as my mom, the nurses and I began to refer to it with little smiles as we knew it was a "well, crap" kind of thing), we ended up not checking into our room in the Children's hospital for another 3 hours or so.  This meant even more time "waiting"...psychologically not settling in for the night, not getting dinner (and Evie was now at 24 hours without nourishment), but just being given little bites of saltines as we couldn't raise her up more than a 30 degree angle.
Expect the Unexpected 
An IV was in her wrist this whole time.  Evie hates needles of any kind, and to me, an IV in the wrist makes me see her as "sick" and she acts like a sick child because she's unable to feel comfortable enough to do anything!  I didn't "expect" the IV.  It was actually there for the sedation initially, but they didn't remove it after the sedation because they needed to give her two doses of antibiotic before she left the hospital. 
Expect the Unexpected
Once we got to our room, we checked out the TV that was positioned perfectly in front of her and hanging high on the wall.  Super, we could watch her favorite shows on Nickelodeon.   Ah, but no.  As fate would have it, the cable stations had changed unexpectedly that day and all of the children's stations had disappeared.  

Well, let's see if they have some good Blue's Clues or Dora DVDs.  Hallelujah!  They did!  Now let's play them.  No go!  The DVD player was broken.  If any of you have seen Evie get disappointed after looking forward to something, you know that this was crushing to me...I watched her struggle all day long, and now this?  I was glad to have loaded up both of our iPads with Full House episodes.  We turned those on and watched them all night until about 11 pm.  
Expect the Unexpected
I expected that we'd get a good night's sleep in the hospital.  The new parent beds in the rooms were much, much, MUCH better than the ones we slept on in the old hospital when Evie was baby.  The rooms are remarkably beautiful in the new hospital as well.  However, I forgot about the rule of life in hospitals that states:  
Monitors that are on will sound alarms between the hours of 12 pm and 7 am as frequently as possible.
I turned Evie's iPad on to Life 102.5 so we could listen to the music through the night.  That least each time I woke up and had to call the nurse to fix the monitor I was ministered to through the inspiring music.
Expect the Unexpected
I expected to go and get coffee in the morning, and have that go smoothly; but instead I ended up with half and half down the front leg of my jeans.

I expected to see Evie bounce back as she normally does; but instead she seemed afraid to walk (likely because of the "incident" from the day before); she was second guessing her own abilities, and that wasn't normal.  

I expected her to want to Facetime with people; but instead she was so tired that she didn't want to see or talk to anyone.

I should learn to expect the unexpected when it comes to life.  But, we'd been in a medical utopia of "not much going on" and I got out of practice.  That's probably good; to think that we had been so far removed from hospital life that I experienced culture shock at being drawn back in.  It just didn't feel good to be caught unaware with bloody hands on Monday, half and half on my jeans Tuesday, and no sleep to stop this weary mom from crying in the elevator on the way in between. 

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