{Lily Update}

It’s been a little while since I wrote about Lily.  To briefly catch up those who don’t know. In July, Lily had her first episode of SVT.  Supraventricular tachycardia (SVT) is defined as an abnormally fast heartbeat.   A normal heart rate is 60 to 100 beats per minute.  Lily’s was 196.  You can read more about that first experience here.

Lily continued to have those episodes which prompted many tests.  EKG’s, a cat scan, an mri, bloodwork, etc.  It was discovered that she has coarctation of the aorta. Coarctation of the aorta is a narrowing of the aorta, the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body.  This was an unexpected discovery and she has had many other follow up appointments as we work with her cardiologists to decide the best way to fix it.

She has seen a rheumatologist who has ordered a PET scan.  This will be to see if she has any active inflammation of her arteries.   Her cardiologist wants her to have an MRI of her head to make sure there is no concern there.  Those tests are still ahead of us.

We decided to do a little retail therapy with our gift cards from Christmas before seeing the cardiologist 🙂

a

Lily had an ablation done on November 27th to hopefully fix the SVT.  She was great for about 2 weeks, then had another episode in December.  She has had two more episodes since then and is now taking beta blockers.  We are hoping the medicine keeps her out of SVT and we also have the possibility of having another ablation done if we feel it’s needed.

Hopefully we won’t have anymore ER visits now that she’s on the medicine.

c

Yesterday, Lily saw a geneticist that we waited 2 hours to see!  Our appt. was at 11a.m. and were finally seen at 1p.m. ugh! So, when you’re bored while waiting you take pictures 🙂

b

Apparently, there are some syndromes that can affect how coarctation of the aorta is treated.  We need to see if Lily has any of them.  So, we answered the questions and she had bloodwork done and now we wait for the results (3-4 weeks).

We are still very much in the middle of figuring out miss Lily and how best to treat her.  The more we discover and uncover, the more I realize what a miracle she is.  We continue to believe and expect complete healing for her.  This time of year, I am especially reminded of God’s miracle working power as we are coming up on the two year anniversary of Jaidin’s stroke and his incredible healing.  I’ll be blogging about that very soon!

Hope you all have a great day!  I’ll see you back here on Friday for Friday Favorites!

Rachel Signature