Monday, September 22, 2014

Round Two..

Kinsley Anne went to her 6 month cardiac cath follow up today.  We started off with an ECHO.  Kinsley Anne hopped up on the exam table, laid down, and did the entire ECHO without any compalints, whimpers, or tears.  How far she has come in 9 months since her first ECHO.  After the ECHO, Kins had her appointment with the cardiologist.  Dr. Liou was so impressed with how much our sweet girl has "matured."  She is wise beyond her years & follows directions to complete quite the physical exam.  Dr. Liou remembered "Raffy's" name & asked how he was doing.  Let's suffice it to say that that made Kinsley Anne REALLY happy.  Kinsley Anne got a pretty good report, including having a "NORMAL" exam...no more heart murmur! Dr. Liou explained that today's ECHO showed no real change, for better or worse.  Before the cath, her pulmonary artery was measuring ~3mm, if I remember correctly.  After the cath/ballooning, it measured ~5mm. ~5mm is what it still measures now as well.  We were all not so silently hoping that the pulmonary artery would continue to grow after the cath.  But, that hasn't happened.  The good news is that it hasn't decreased in size, which was also a possibility.



So, with all of that being said, Dr. Liou recommended doing a 2nd cath.  This is not an urgent need. But, she desires to do it nonetheless.  She has goals for Kinsley (which Kyle & I agree with) and we're not quite there.  Although we have seen definite improvements in Kinsley Anne, we too have high hopes for increased activity tolerance, decreased antibiotic use, etc.  She said that if we weren't moving in the near future, we would just schedule it based on convenience.  Given that we're moving, she said that she would look to see if she could do it in the next 2 weeks, but chances were that we would not be able to and we'd follow up to do the cath with our new doctor.  Dr. Liou's nurse coordinator, Cherryl, said she could try to "work her magic" but that Dr. Liou's schedule was really full.  I had texted Kyle's mom that we needed prayers for a cancellation and not 30 minutes later, Cherryl called saying that another patient cancelled for THIS WEDNESDAY, 9/24.  So, prayer warriors, we need you!!! Please keep our sweet girl (and us) in your prayers this week.

We talked extensively about our upcoming move as well.  Dr. Liou has a colleague in Atlanta who used to work with her at TX Children's.  Given that there are no pediatric interventional cardiologists like Kinsley Anne needs in the upstate of South Carolina, we will continue her care at the Sibley Heart Center at Children's Healthcare of Atlanta once we move.  We have the utmost confidence in that program as well.

Here are our specific prayer requests:

  • That Kinsley Anne would not be anxious Wednesday morning through the check-in process.
    • She already knows that we have to go back to the hospital Wednesday for Dr. Liou to keep working on making her heart healthier.  She is OK with this but wants to be asleep to get her IV (which we will ensure happens).
  • That the team of doctors/nurses in the cath lab would be extremely careful, patient, and purposeful with everything they do to & for our sweet girl.
  • That she would tolerate anesthesia well & that she would come off of the ventilator without difficulty at the end of the procedure.
  • For Kinsley Anne's pulmonary artery to tolerate balloon angioplasty well, like last time, and that it would provide further dilation (we want the pulmonary artery bigger, allowing more blood flow).
  • That Kinsley Anne's recovery would be uneventful & that we would be able to bring a spunky, healthy little girl to South Carolina in 2.5 weeks!
  • For peace of mind for her mama & daddy.

  
Kinsley Anne picking out prizes & stickers with Cherryl

Thank yall for praying for our family as you have been so faithful in doing in the past.  We love you & appreciate you.  Jen will update Facebook on Wednesday throughout the day (our best guess is a 6hr procedure, but it could be more or less).  

Until Next Time...
Love, Jen 

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