delayed

Surgery has been rescheduled.  Last Friday I spoke with the nurse that was going to do Lucy's pre op appointment.  She said if Lucy shows any symptoms that would indicate she is getting sick to call.  Lucy needs to be healthy going into surgery in order for recovery to be as short as possible.  I didn't worry about it since Lucy hasn't been sick since she came home a year ago.  Sure enough early Monday morning at about 1 a.m, as I was trying to rock Lucy back to sleep.  She seem rather warm.  I took her tempurature and it was 100.3 degrees.  At that time I called the cardiologist to see if there was anything we should do.  He said to keep an eye on her tempurature and look for any other symptoms.

Monday was a lot of sleeping, crying and tylenol.  Tuesday we made it to the pediatrician where she confirmed an ear infection and put Lucy on antibiotics.  Lucy will be  antibiotics for ten days.  You guessed it.....surgery is delayed.  They would like her healthy for a week after her antibiotics are done.  We have tentatively scheduled surgery June 4th.

Lucy had some trouble settling in her bed on Sunday night when her fever spiked, so we brought a pillow down to the family room and we snuggled on the couch.  All day Monday and Tuesday she did more lounging (mostly sleeping) on the couch.  Even sick and puffy she still looked adorable.

and I managed to sneak a smile...hope she can get back to her normal smiley self soon.

number 5

We will head back to the hospital after a five month break for surgery.  We got the call from Dr. Husayni last Thursday afternoon after the conference.  He said the team went back and forth on which path to take, but ultimately settled on surgery.  This will be number five.  We were really hoping to stay out of the hospital in 2015, but we are prepared to do whatever it takes to keep Lucy as healthy as possible.

The narrowing of the aorta is restricting blood flow and putting extra stress on her heart and the team felt that a catherization would only delay surgery.  This will be the first time we are not admitted prior to surgery.  On Monday afternoon we will head down to the hospital for a three hour pre-op appointment.  They will do blood work, x-rays, etc.  I assume it will not be a fun afternoon.  Then Thursday we will pack up for an undetermined hospital stay.  Of course I asked what the average recovery time is.....Katie (Dr. Ilbawi's nurse) says, I can give you average, but you know Lucy marches to the beat of her own drum.  We can pray that this time, she can make the average recovery time and be out in five days!

I tear up as I am writing this, not because we need surgery, but because I don't want to be in the hospital.  The hospital sucks.  It messes with Lucy's schedule.  It is exhausting and stressful.  It isn't home!  It is amazing how five months can feel like forever!  When I counted how long since our last discharge, hard to believe it was only five months....November 30th.  I think my biggest fear is how Lucy will do now that she is mobile.

Back to surgery, so there are two approaches to fixing Lucy's aorta.  Not being in the hospital, has one disadvantage.....I don't get to sit down to discuss exactly what is happening.  The surgeons will either (in lay men's term) cut out the narrowing and reattach the aorta or they will patch the narrowing to remain larger.  They will decide what approach to take in the operating room.

Prayers specifically for the following would be greatly appreciated
-Lucy's medical team as they operate and care for her
-Lucy to cope with surgery and the change in her routine
-Lucy to recover quickly
-For Mike and I to handle this unexpected hospital stay with grace and patience