6 States in 2 Weeks!

Yes!  After Thursday we will have traveled in 6 states in the last 2 weeks.  Crazy!

We just finished an AMAZING trip to Florida, but I am going to save that story for another post.  It was such a smooth vacation, and I want to share in case it can help anyone else have a seamless vacation as well! 

I wanted to post today to do a medical update, since it's been quite some time.  First off, Macy is doing fantastic!  She feels good and looks good!  However about a month ago, we went on a little adventure for a few days, but everything turned out okay.  It all started with a phone call from the nurse at school stating that Macy just didn't "feel right", and that her heart rate was lower than usual.  I rushed out of school, and took her to the pediatrician.  They did agree that her heart rate was lower than usual, but couldn't see anything else unusual going on.  They just told me to watch her.  We went home, and she seemed to feel better as the day went on, so I sent her back to school the next day.  By 8:30 a.m., she was texting me saying that she wasn't okay.  I called cardiology and our team in Chicago.  Both teams wanted us to take her to Riley Hospital.  So Jeremy and I rushed out of work again, and took her right there.  They did some lab work and an ekg.  The ekg came back with some variances which can by typical of a child with Tetralogy of Fallot.  However, he wanted to look further into it and ordered a 24 hour holter monitor.  She wore it to school the next day.  The results came back good and so did her blood work.  By the end of the week, she was feeling back to herself.  So who knows????  I am just thankful it was nothing!

The next week she had a planned MRI.  We had it done at Riley since Chicago was unable to accommodate our schedule.  It went great, and I really liked the process at Riley.  They stopped and restarted a few times which broke up the long process for Macy.  It was a battle getting the images sent to Chicago, but we got it all worked out.

They finally got the images last Wednesday.  Dr. Superina said everything looked very good!  Just like her ultrasound showed in July, it looks like she might have a little narrowing in her Rex Shunt (the vein from her neck, that he placed in her liver).  He wants to do a venogram to make sure that the pressures all still looking good and then determine if they want to do a little ballooning to make that narrowing a little larger.  So we'll head up there this week for this procedure.  If they just do the venogram she will be outpatient, if they do the angio (ballooning) they will keep her inpatient overnight for observation.  We then see Dr. Superina and his team the next day. 

Due to her being on Coumadin (a blood thinner), we have a special process of transitioning her to another med so that she can safely have this procedure done.  It required us to stop her oral Coumadin medication and start an injection blood thinner.  The injection has to be done in her stomach twice a day.  Now, I'm a pretty medical-savvy mom, and I've seen and done things to my child medically that's pretty crazy.....but I HATE giving these injections to her.  She's a trooper of course!  I am not sure if it's because it's in her stomach or whether it's because you can clearly see the needle (unlike her growth hormone injections).  I have seriously had so much anxiety over this.....I keep telling myself to pull it together, lol.  Anyway, we only have to do these through Wednesday morning. 

We are praying that she does not need the angio and that all pressures in her Rex look good.  We are praying that Dr. Superina gives her the okay to stop the Coumadin for good!!!  Please pray for these things.  Most importantly, pray for Macy as she undergoes her 33rd surgery.  Thanks for checking in our us, and we always appreciate the continued prayers!