Update 4/4/2013

I have struggled with where to begin writing this post. I am so ready to write about how well Carter is doing, but today is not the day.  Today we received more unexpected news.  The ultrasound they performed to check for a blood clot yesterday came back.  Carter has a large blood clot is his groin/pelvic area.  It is in his left external iliac vein.  It is occluding the entire vein.  We noticed after surgery Carter's left leg was more swollen than the right.  It was so swollen they had to re-wrap and loosen the wrap and brace on his left leg a few days after surgery.  The nurses have had a hard time finding a pulse in his left foot, but assumed it was due to all of the swelling.  We have also noticed Carter has limited movement in his left leg and foot, and this is a risk of the osteotomy surgery.  We expect full return of the movement after the swelling goes down and the nerves have time to heal. However, we were completely shocked to find out he had a clot.  Mainly because Carter's urologist told us yesterday that in his 25 years of doing exstrophy surgeries he has never seen a child develop a clot.  Carter's urologist is #1 in the world for performing this surgery successfully, and he has seen hundreds of children with Carter's condition.

They have decided that putting Carter on blood thinners to help break up the clot is not an option.  With the external fixators and all of the trauma from surgery that just occurred, there is too big of a risk of internal bleeding.  We are going to pray Carter's body breaks down and absorbs the clot.  If it is dislodged, it will go to his lungs and could be fatal.  Carter will have another ultrasound on Monday to check the clot.  We are praying for a miracle. Praying for it to be gone.  Another concern is Carter's breathing.  He is on a lot of oxygen and is still having trouble keeping his oxygen saturation up at times.  They are concerned that small pieces are breaking off of the clot and causing small pulmonary embolisms.  We are praying this is not the case.  If he continues to have breathing difficulties they will perform a CT scan of his chest to check for a pulmonary embolism.  Right now there is not much they can do to treat the clot, so we are going give it to the Master Healer and Great Physician while we wait it out and see if his body will reabsorb it.  

On a more positive note Carter's temperatures have been lower today than they have been since surgery.  The new antibiotic is working.  During his brief moments of being awake he seems to be feeling better.  Your prayers were heard and the doctors were guided in the right direction.They considered taking him to surgery again today to have the GJ tube placed.  In the end they decided that he is still too unstable.  They will look things over again on Monday.  They placed him on TPN and lipids (IV nutrition) until he is stable enough to have the surgery.  He is also receiving formula through his feeding tube at an extremely slow rate.  They are continuing to give him the formula to keep his intestines stimulated, but are doing it at a slow rate to keep him from aspirating again.  

We feel so helpless.  He is so sick and there is nothing we can do.  God has been so good to our family and we know he has big plans for Carter.  It is just not always easy to sit back and watch them unfold. Especially since it is our sweet and innocent child that does not understand what is going on.  We are so grateful to all of you that are praying for our family.  It brightens our day to see all of your sweet comments, text and phone calls.  It has made all of this so much easier. As always... To Him be the Glory!