Prayers Needed For Our Friend Alex

Our friend Alex really needs prayers! Yesterday was his surgery to remove his Central Line. It did not go as expected, but in the end it all work out.

This is the from Alex's mom's journal on his Caringbridge page:
When the surgeon went to remove the line she cut away the scar tissue holding the line in place. Usually at this point the line just slips out. Nope...not Alex. His would not come out and she said that it felt different when she gently tugged on it. She decided to open up the skin a little higher in the line to see why it would not release. What she found scared her. His line was actually broken under his skin. The other sheath of the cath was separated from the inner. It was just a very tiny amount of plastic that was holding his line together. If this would have broken it would have been devastating. Alex most likely would have died because we would not have known what had happened. The cath would have looked fine on the outside. The tip would have traveled right to his heart. We are so thankful for the excellent docs at duPont.


Please pray for their strength, for Alex's body to fight this Mito disease and for their comfort and healing.

Alex is 6 years old, he is too wise for his age and it is not right, he is a child and that is how it should be. Please Lord just let him be 6, he knows this disease will take him from his earthly home and it is not fair. Be by his parents side and give them strength. Help Alex to be couragous and help his little sister, because she misses her brother.  

It is so good to know that duPont gives them great care and I pray for the doctors to. That they can help Alex and the many other children suffering from Mito and other chronic illnesses at their facility.



Update for me: I got the go ahead from my Neurologist, Dr. Mackin, to go to Cleveand Clinic. He knows there is something going on but he feels like it is time for me to go for second opinions. All muscle biopsy results were negative, but that doesn't mean that there is nothing going on. I am awaiting the Cytochrome C Oxidase Deficiency  results.
Cleveland is the best for Neuromuscular and I am going to try to go this summer.