Rory update

Since we left Baystate Hospital in Springfield on April 29, Rory has had several more echocardiograms.  One in Pittsfield and one in Springfield again, to start with.  These two echos showed that Rory does have aneurisms on his coronary arteries, with the right larger than the left.  The doctors have also been monitoring Rory's platelet count and EKG readings.  They put Rory on daily baby aspirin and he also started plavix, another blood thinner, to prevent clots from forming.

After the (much appreciated) strong encouragement from two of my physician friends from Albany, we called to set up a second opinion appointment at Boston Children's Hospital, where they have a specialized Kawasaki team.  It was a very exhausting day, but definitely well worth the trip!  Rory needed to be sedated for the echo, which was protocol for all infants through 2.5 year olds.  He also had an EKG and more blood drawn.  Dr. Newberger, the head of the Kawasaki team who has done much research on the disease, the nurse, and the nurse practitioner were very nice and spent a great deal of time with us, explaining Rory's current status and prognosis clearly.  Luckily they didn't find anything new, but just confirmed what we already knew about the aneurisms on both coronary arteries.  The doctor was on the fence about switching the plavix to a stronger blood thinner like lovonox, due to the size of the larger aneurism, but finally decided that if it had been a little bigger she would switch the meds, and we should keep him on the current ones.   We're also supposed to continue with weekly echos for a few more weeks to make sure the aneurisms are not growing, but hopefully getting smaller, and to make sure that there are no clots forming.  Thankfully, due to his young age and the fact that the diagnosis was made and treatment began when it did, Rory has a good long-term prognosis.  He will need to be on the aspirin for at least a year, if not longer, but not as long on the plavix.  Rory will also need to have routine echocardiogram follow-ups, probably throughtout his life.

Rory has been a real trooper through this whole process!  Rory continues to be very attached to me, but that's to be expected for several weeks after the initial illness.  Besides that it's hard to know that he has this serious disease with all the smiles we see!  Thank you all for your continued prayers and well wishes!

Pre-medication

 Fast asleep during the echocardiogram

 

EKG

Wobbly Rory after the procedure