Out of the woods

There is an article circulating on social media called 'Out of the Woods' which details what it means to be a parent of a chronically ill child.  While I don't consider Lucy a chronically ill child, surgical intervention will never truly 'fix' her heart.  The article talks about even on the best of days parents live in a world where they are always waiting for the other shoe to drop.  I would not say we dwell on the bad or are constantly thinking about when something will happen, but you can imagine why appointments can be surrounded with anxiety and worry.  Last year we had three unexpected hospital admittances and one unexpected surgery.

Most of the time I go into an appointment day with the highest of hopes: a three month pass and the reality of her diagnosis: a possible admittance.  Last Thursday we landed somewhere in between.

We arrived a half hour early so we could visit some of our favorite nurses in the PSHU.  We were lucky to see a lot of the nurses we knew from our very first stay were working!  Lucy was unsure at first, but in true Lucy fashion warmed up to the attention quickly.  The nurses even paged the attending cardiologist for a couple of cuddles.  Celebrity status?  I can't decide if that's a good thing to have at a hospital!

We headed to our appointment for a scheduled EKG and echo.  It's been awhile so I wasn't sure how Lucy would handle everything.  She did well with weight, height and vitals.  Then I got her undressed for the EKG and the minute I laid her down she started crying.  We made it through and then moved onto the echo.  More of the same until, wait for it......we played the theme song to the TV show Big Bang Theory.  Weird, right?  Whatever does the trick.  That song and video combo puts her in a trance.  We played it about eight times and then my dad and I needed a break (we moved onto bubble guppies).  But it was by far the easiest echo to get through.  After Dr. Husayni reviewed the echo he came into the room to discuss the results.  He told us that the coarctation of the aorta had narrowed  to it's previous size and we would need to intervene.  They are discussing the case this week and will call with a decision.  He stated that we could probably try a catherization to balloon the aorta (using a bigger balloon) and hope it takes this time.  The catherization should be (using the term ,should be, very loosely) an overnight stay.  Our past would indicate otherwise and like usual we will wait to find out.  Lucy is definitely more aware now so I am hoping if I talk to her about what is happening it will help her cope a little better.

Crafting her pool skills

We continue struggle with Lucy's separation anxiety but we know it is completely normal.  We have started a bedtime routine because going to bed has also been a struggle.  We've added changing to pajamas and teeth brushing.  We are hoping these two things will help her settle better at night.


She always wants what mom has.  I promise the glass was empty and she was supervised!

Prayers surrounding this next hospital visit would be greatly appreciated.  Specifically that it does not impact Lucy's progress in her therapies.  Also, that we are able to get in and out in just one night!