Wednesday, November 11, 2009

Update on Carter

Dear Friends of Carter,
I am sitting here at my kitchen table and am listening to Bo and the older two boys rough house and play – their usual bedtime routine. I hear Carter’s breathing treatment going in the background. I look over and I see two amazing little bundles of joy snoozing here in the living room.
I wish I were coming here with some wonderful amazing news, however as is the case most often with Carter’s journey, we come with heavy hearts. I am laying out the outline of this update and Bo is going to intermingle his thoughts in with mine so it is a complete picture from us both.
I think back to April 12, 2004 when we thought our healthy second son was about to be born…what joy…what innocence we had…how innocent our families all were. Then I think about the NICU at LeBonheur. I think about that perfect second born of mine needing open heart surgery at eight days old. I think about the machines, and those precious nurses that had the privilege of dealing with hard headed me (Lindy). I think of the verse that just screamed to me – my Holy Daddy’s voice speaking, “I know the plans I have for you…not to harm you…to give you a hope and a future” Jeremiah 29:11
I hear my Holy Daddy’s voice saying those same words tonight in my ear as I sit here exposing myself to the world. What have I learned in 5 ½ years? That His ways are not our ways, His thoughts are not our thoughts and we have learned to rejoice in that. I have learned that Job and I will have a great chat one day if we ever take a break from worshipping Jesus.
As many of you know, Carter had a heart cath in May 2009. This was the heart cath that was supposed to make his heart function better and set up a better life for Carter. Many of you also know that instead of receiving news of improved heart function, we received a different outlook for Carter’s future with a diagnosis of Plastic Bronchitis .
Over the past five to six months we have been to numerous appointments with pulmonology and immunology and have had an Upper GI and a Bronchial scope…all in search of a glimmer of hope that this diagnosis of plastic bronchitis was not true.
Dr. Schumacher, our pulmonologist at Le Bonheur, saw Bo and Carter this past Monday. Bo went with a list of questions to solidify what we already knew in our hearts from the research we have done. If our Cardiologists are not able to come up with a procedure to drastically improve Carter’s heart function, and we have tried everything possible at this point short of a heart transplant, then Dr. Schumacher said that the plastic bronchitis will be terminal (life ending) for Carter.
Now, here is where I want to clarify something. Bo and I firmly believe in a Sovereign God. We believe that He set this world in motion knowing long before earth was formed the number of days each of us have (Psalm 139). Meaning all of our days, as well as Carter’s, are numbered by a Sovereign God. My Holy Daddy knew long before I fell in love with Bo how long our Carter would live on this earth. So Bo and I are well aware that we do not have to worry about when Carter leaves this earth.
Now, I am human, so please do not think that I do not think about what this means. I worry often…to the point of extreme tears while fighting away panic attacks. But I also can cling to scripture in Philippians 4:4-9 when it says to be anxious for nothing and take this to my Holy Daddy.
We do not know how long Carter has; only our Father knows that. We do know from the research that most of these children live on average about five years after diagnosis. I started noticing Carter’s symptoms in August of 2008. The length of time that he has left will be determined by how aggressively the disease progresses in his little body. Dr Schumacher was disappointed at how much it had progressed since he last saw Carter. He said that there had been noticeable changes to his lungs already.
We will continue living life just as we have since April 2004 – one day at a time, often one moment at a time. We will celebrate life every day and live like tomorrow is our last. We will not go through this life in despair but remember that the joy of the Lord is our strength. He is our refuge and our fortress.
We do desperately need your prayers. We need God’s strength and wisdom as we trudge forward in what is ahead. We do not know if he even qualifies for a heart transplant, which is the only option at this point to try to rid his body of the plastic bronchitis. He has many secondary issues which may very well disqualify him from even being placed on the transplant list. We do not know what medically can be done for Carter’s comfort should a transplant be out of the question. There are many questions left unanswered for us, but two that we do know are 1) the plastic bronchitis is terminal and 2)plastic bronchitis or not, God is still in control.
We will see Dr. Lutterman, i.e. Dr. Joel, Carter’s main cardiologist, in December. Hopefully, we can begin to lay out how we will move forward at that point. Please put him on your prayer lists and/or chains once again. If he has remained on them, please update with this new information. Prayer works! You absolutely CANNOT look at Carter’s life and draw any other conclusion as far as we are concerned. Bless each of you for checking on us. Blessed be the name of the Lord!
Bo and Lindy

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