On Friday afternoon, we were informed that Dr. Markert at Duke is unwilling to evaluate Malachi for a transplant due to his ventilator dependency. The outcome of the procedure doing what it is supposed to is like 50-75%. However, this has only been done on 60 patients AND she is the ONLY physician in the world who is working on this research. Obviously, she only wants to proceed with patients who have probable outcomes of success. Frankly, we only wanted her operating on Malachi if there was a good chance it would work. The decision was made for us. The thymus transplant is off the table for Malachi.
We meet with doctors at 9:30 this morning.
I'm so sorry! I despise the pain and uncertainty of this life! Praying for peace and comfort...watching for updates.
ReplyDeleteI am so sorry she will not see you. My thought and prayers are with you all.
ReplyDeleteOur hearts are heavy along with yours. Praying that Jesus would bring the comfort only he can bring.
ReplyDeleteRolf and Trish
Words seem like such a cheap substitue right now for all that you must be feeling and going through.
ReplyDeleteI am so sorry.
I, too, though not nearly to the same degree, have watched my daughter and my son fight for their lives in the NICU. It is with such a great deal of sadness that I read this news. I prayed so hard for a miracle.
I have followed your blog for months, laughed at your humor, oohhed and ahhed over every picture, rejoiced in the victories, small as they may be.
When my oldest sister lost a baby at birth, this verse gave me comfort, as I pray it may do for you...
I Corinthians 13:12, "Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known."
praying for a peace that passes understanding for you, John, Emma, Malachi and your new precious one growing each day.
Know that you are being upheld. When your arms are too heavy to lift anymore, I pray that others will come alongside you and carry your burden.
My thoughts are with you and your entire family.