Iowa City - 2015

Yesterday we ventured to Iowa City for Brady’s yearly procedure and specialist appointment.  To those of you who sent messages and prayers our direction, we thank you from the bottom of our hearts.  It truly means the world to know we have a strong support system behind us, no matter what.

 

As mentioned previously, we decided to do mild sedation for Brady.  This meant nothing to eat or drink eight hours prior to his appointment, which had us checking in at 9:30am.  Originally I wanted to stay in Iowa City the evening before to help with this aspect of the trip, but our schedule warranted us staying put and traveling in the morning.  Believe it or not, Brady did great!

We checked in and headed back for sedation.  There was quite a team involved but the most important person for us yesterday was the child life specialist.  This was someone I really wanted with us during the day and boy was it a life saver!  She immediately greeted us and got acquainted with Brady.  Even though I hadn’t made mention of Tessa tagging along, someone else from the staff must have because the child life specialist came prepare with specific books and toys tailored to her as well. 

The child life specialist familiarized Brady with the mask he would be wearing and let him pick out stickers and decorations for it.  She even let him smell different scents to put in it and he loved that “game.”  He chose cotton candy. 

Once everyone was in position and Brady was settled (I sat in a corner facing the wall with Tess on my lap) they began the sedation and catheter placement.  As mentioned before, there was a lot of staff involved between the doctors, nurses, child life, etc.  One member of the staff was next to the wall I was facing.  I happened to look over at her to get an idea of how it was going, even though I could hear everything, and she was crying.  When I saw that, I had to turn and watch for myself while being cognizant of making sure Tessa didn’t.  All I will say is that it simply isn’t easy to watch your child be in pain.

After catheter placement we need to go to Radiology for Brady’s VCUG procedure.  We ended up waiting for over an hour in the waiting room.  This was not ideal as Brady was feeling the pain and discomfort of his catheter.  He would want to stand, then sit, then attempt to rip off his hospital bracelet, and then cry…it was a vicious cycle and again, I couldn’t have been more thankful for the child life specialist.  She left only briefly and then came back to help us change Brady’s focus.  Even though David and I were at good odds with the kids (1:1) it was so nice to have that third person to help!

Finally we were able to head back to the procedure room.  David assisted in Radiology while Tess and I sat behind the partition.  I wanted to be able to watch but not be in the way.  With work and multiple appointments, I am getting decent at ready the images when they appear.  It wasn’t long into the procedure for us to realize what we were dealing with.  The Radiologist was able to get great images with a full bladder and would get some after voiding as well.  Brady refused to go on the exam table and kept saying “go on big boy potty” so that’s what we did.  Luckily there was one adjacent to the exam room and I think he was anxious to get off that cold table!  Unfortunately, images were needed after using the bathroom so he wasn’t too happy with anyone.  The whole procedure took about 25 minutes.  When it was over, child life gave him a sweet little buffalo beanie baby named Roam.  Roam has not left his side for the past day. J  Tessa was also given a small lego set.  Both of these items were a great distraction as we ventured to our third and last appointment of the day, sans the child life speciailist.

We met with the specialist around 1pm for our last appointment.  Both David and I had a good idea with what we were facing going into it, but definitely wanted to hear his remarks.  Here’s what we know:

-The right kidney (his small kidney that does 25% of the work) showed nearly spontaneous resolution at his appointment last year.  This year, the reflux is back and is at least a grade III.  Big question from us; does it really come back like that or was it somehow missed last year?  According to the specialist, it is possible for it to come back.  Hmmm

-The left kidney showed grade IV last year and is still showing reflux this year.  This is Brady’s normal size kidney that is doing 75% of the work. 

What do we do now?

Well, Brady has not been getting infections, so the doctors feel confident his kidneys aren’t seeing much damage from the reflux.  There is still a chance that he may outgrow all of this.  However, Brady was born with grade V reflux on both sides, so his likelihood of outgrowing it isn’t as high. 

We were told at last year’s appointment that if the reflux hadn’t improved, they would recommend surgery.  However, given how little Brady is, they would like to see him have the opportunity to grow another year and repeat all testing next fall.  If the testing shows continued reflux, surgery will happen as Brady is a bit of a special case due to his insufficient kidney size and functioning.  All of this will change should he have any infections prior to next year so we are hoping for a healthy little boy in the months to come!