Here is the information we took from yesterday. First, it is overwhelming to try and wrap my head around this complicated issue. She has had tests on top of more tests, and has taken each one like a trooper with few complaints. I am so proud of her. When we got to Children’s the specialist clarified the reason for two of her tests: First blood test indicated liver issues, blood flow problems to the liver, which would cause liver failure. Went right to ultrasound, results came back “Perfect”. No problems with liver.
Rheumatology. The study of disease where the body turns on itself. Again blood tests indicated that she might have problems with something related to these issues. Went right over to Rheumatologist where she did a full body exam looking for visible signs of lupus, arthritis, thyroid issues etc… NO VISIBLE SIGNS or reason for immediate concern. Took more blood and urine tests, waiting for results.
Both above causes can contribute or cause pulmonary hypertension. Two more issues off the list, which still leaves us with…. No answers!
Surgery on Tuesday will tell the doctor what she needs to know to prescribe medication to get the oxygen extended all the way out into the lungs. To open the tubes that are restricted so she can function without overextending her heart.
So waiting again… for the procedure on Tuesday. Then we will have some direction. Planning on starting medication by Wednesday.
We spent a tiny bit discussing the two most dreaded words I can imagine… life expectancy. I barely listen but what is clear is that this is a serious disease and it making her life so much more difficult. After they get in there and see what is going on we will know a lot more about that.I fall back on what I know for sure: God has an amazing plan for Isabelle. He will stand in the gap and bring her out of danger, He has before and He will do it again. I am incredibly grateful for the staff at Childrens, I am, but my faith in God remains the same. He is the ultimate physician and I will continue to ask Him to take care of the gift He gave me so I can be with her for a very long time. Thanks for praying…truly.