Justin had his first appointment today at noon with the pulmonology/scleroderma specialist. We liked him a lot. He had received all Justin's information...but he asked us to tell his story in our own words. As we were telling him...he stopped us so he could go to his office and get a picture of his family. He too has 3 little boys...under the age of 6...one of them has downs. He said..."wow, God definitely brought us together!"
Thursday, June 30, 2011
Um....YEAH HE DID!!
So he ordered a ton of tests and said he would talk to us after we went to the next appointments.
We went to the next appointment (same building just different floor) and two doctors met us there. One Rhematologist and one Scleroderma/Polymyositis/Overlap Syndrome Specialist.
After a few moments of questions...all 3 doctors stood over Justin spouting off medical stuff...for what seemed like forever. They pretty much spoke completely in acronym.
They are concerned with his nailfold capillaries and the way his skin looked.
His muscle weakness is very alarming.
They were all very happy with Dr. F in San Antonio. They were pleased with how aggressive he had been with his treatment. They were very concerned that these treatments had not helped.
They decided he needed to be admitted. They said nothing with his diagnosis was straightforward. They said he was "very complicated". They said they wanted this daddy to get better...but they needed more answers.
We spent a few hours doing tests. He got a CAT scan and Echo and more blood work.
So now we are here...admitted into the Cleveland Clinic Hospital. He has to share a room and bathroom. There is only a small space for me to sit...like a classroom chair. I do not think guests are encouraged to stay long :(
I can say that I am for sure the saddest I have ever been in my life. Is saddest a word?
Either way...I am. And I have dealt with some pretty sad stuff.
Today's Jesus Calling was pretty legit. I very much recommend that you get this book...and read it EVERY day. Go back to the day of June 18th...that is when miracles started happening at our house. Lots of miracles are happening all around us each moment....just the fact the we are here and able to be in the very best care. The most wonderful family that got us here and that is continuing to pray for us. Our kids are taken care of (although I already miss them so so much)...our friends are busy praying and planning...our God is so big. So crazy mighty.
It is great that Justin will have around the clock care...it is great that they are being very proactive in getting to the bottom of this...but I will not lie and say that this is what we hoped for.
Posted by misty mac at 3:10 PM