MRI/MRA

Today was the dreaded day --Parker's first time under general anesthesia for his MRI/MRA brain, eye orbit, and blood vessel scans.  I admittedly had a lot of fear about this for a lot of different reasons.  First, it is something that can be a little more dangerous for children with Down Syndrome because of their varying heart issues and low muscle tone.  Secondly, general anesthesia is something that neither Matt nor myself have ever experienced.  Expecting a 9 month old to deal with that was anxiety-inducing.  Lastly....HOW do you withhold food from a baby? For this one, I decided to wake P up at 3:45am for a bottle so the drive there and prep before anesthesia was not so painful!

Everyone at Lurie Children's (downtown Chicago) was great! They were very good with Parker-- obviously having a lot of experience with children (and their nervous parents).  Parker got to wear a super cute tiger hospital gown, and they waited until after he was under anesthesia to do any IVs and shots.  It made me feel so much better to know that he wasn't in any pain!

I keep battling with how to feel about and describe our anesthesiologist.  On one hand, he exhibited a lot of the same characteristics as the other doctors and nurses- very friendly, good with children, and used parent-friendly language.  On the other hand, he clearly had no training in speaking with parents of a child with special needs.  He must have called Parker a "Downs Kid" about 15 times.  He also proceeded to tell us that there was a 50-50 chance of needing to be intubation, and that as parents of a "Downs Kid," we should expect to have complications any time he has anything done like this that might result in us staying over night at the hospital.  He implied that our lives would always be much more difficult because of Parker.  After the procedure was done and everything was fine, I ended up asking the nurse we had to pass along a message to the staff about using "person-first language" because the tone and word choices of this anesthesiologist rubbed us the wrong way. 

I know that person-first language seems so minor to a lot of people.  I just wish that everyone could understand why it matters so much.  It demonstrates that you are truly viewing the person before the condition.  The way this doctor said "Downs Kid" really made me feel like he didn't see Parker as a person.  I am sure that he does that as a defense mechanism in his job, but still.  It has been on my mind since!

Overall, the day was a success.  Parker's neurologist took time out of her evening to call us on Friday night to tell us that all looked well on his scans according to the radiologist.  She will be going over them again Thursday to be sure!  Essentially, all that was noted was a smaller area at the base of the head to watch as he gets older (typical with DS), and longer eye orbits (consistent with nearsightedness).  We were so thankful that she was able to do this for us (without us asking) before the weekend!

Lots of relief here!