Once Upon A Prayer

Monday, December 23, 2013

Do Not Worry About Anything...

Many of you follow Lily's journey on the "Praying for Lily" Facebook page.  Our blog has been greatly neglected since it tends to be easier for me to give quick updates on Facebook.  To get everyone up to speed, Lily was admitted to the Cardiac Intensive Care Unit the day before Thanksgiving with a dangerously low sodium.  With the assistance of IV fluids, the team was able to elevate Lily's sodium count, and she was transferred to the Heart and Kidney Unit.  Over the past several weeks, Lily's sodium has dropped dangerously low at times causing two instances of seizures.  The doctors have discovered that the only way to keep Lily's sodium within a safe range is to have her on an IV sodium drip with four doses of sodium chloride tablets administered throughout the day.  She is also on a tight fluid restriction, which leaves her horribly thirsty all the time.  Initially it was thought that this acute Hyponatremia (low sodium) was due to one of the diuretics that Lily was on.  However, that drug was stopped weeks ago, and the problem still persists.  Lily's fragile body has become very puffy with all of the IV sodium, and the team shares in my frustration as the extra fluid causes respiratory distress and makes Lily feel like she is constantly choking.

The Nephrology team feels that the only thing left to try is a drug that is FDA approved for adults called Tolvaptan.  The drug has only been used on a small pediatric population due to the fact that this type of hyponatremia typically only affects children with failed single ventricle anatomy.  Jacques and I were given a copy of the study that was done on the pediatric patients, and we both read through it thoroughly.  I was given the opportunity to discuss our questions with the Cardiology and Nephrology teams.  The hope is that the drug will get rid of the free fluid that has accumulated in Lily's body.  This free fluid has caused her sodium to become diluted, and therefore has her trapped in a vicious cycle of not enough sodium and too much fluid retention.  This drug is very high risk since it can cause the patient's sodium levels to increase dramatically, which would cause brain swelling.  Lily will be in the Cardiac Intensive Care Unit, and will have blood draws every two hours to closely monitor the sodium increase.  Also, because of Lily's clotting disorder there is a lot of concern as to how her body will react to this medication.  We have seen Lily's Coumadin levels jump all over the place over the past few weeks as her sodium levels dropped and increased.  A quick rise in sodium could cause Lily's blood to become too thin, which could put her at risk of a brain bleed or stroke.  I was told this morning that we should have an answer this afternoon from the hospital committee as to whether or not they will approve the use of this drug for Lily.  If they do, it will be sent over from the Washington Hospital Center, and she can begin the treatment tomorrow.  The discouraging thing is that there is no guarantee that this drug will even work.  The hormone that the drug acts upon is not affected according to Lily's bloodwork, but we have been told that sometimes the bloodwork is not a good indicator.  Lily cannot continue down her current path, and everyone agrees that we need to try something.

Jacques and I have bathed this treatment plan decision in countless hours of prayer.  It's impossible to know if we are making the right decision, but we are painfully aware that we need to try something.  Please join us in praying for God to use this medication to stabilize Lily's sodium levels so we can "get outta here"!

Do not worry about anything; instead pray about everything.
Tell God what you need,
and thank Him for all He has done.
Philippians 4:6

Monday, December 16, 2013

Youre Grace Abounds in Deepest Waters

Lily Grace and I have had a lot of special moments together over the past month of this hospitalization.  Anyone who knows Lily will agree that she is an old soul.  A child wise well beyond her four years.  Lily is often asked how many brothers and sisters she has.  She always responds four.  Once I made the mistake of correcting her, and she went on to name them all...including Addy Hope.  Lily talks about "our baby" all of the time, and tells me that she cannot wait to hold her baby sister in heaven. 

Jacques and I brought Dryden and Soleil to the funeral home to meet their baby sister the afternoon after she was born.  They were both adamant that they needed to see her and touch her.  At the time we felt that Mackenzie and Lily were too young to grasp the concept of what had transpired the day before.  Hindsight is 20/20, and I now believe that this decision has left a lot of loose ends for Lily. 

Lily loves when I put photographs to music, and she could not understand why I haven't done this yet for Addy Hope.  This video, is a joint effort between Lily and I.  Together, we tried to memorialize the 39 weeks Addy spent with us here on earth. 

When you go through deep waters, I will be with you
When you go through rivers of difficulty
you will not drown.

When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.

For I am the Lord, your God.
Isiah 43 2-3


Monday, December 2, 2013

Lily - I've Loved You For A Thousand Years

Lily Grace has been asking me during the past couple hospital stays to make her another video.  I told her I was waiting to find the PERFECT song to make a video featuring just her.  I finally found that song, and worked on the video yesterday.  Tonight we sat together before bed, and watched the video together several times.  She loves it!

Lily girl, I have "loved you for a thousand years, 
and I will love you for a thousand more".

I love you a thousand,

Music by: Christina Perri - A Thousand Years