I have really wanted to update everyone on Soren’s status. He has been in the Pediatric ICU at Children’s Hospital since last Tuesday. He had been admitted at IRMC but realized that he needed to have more pediatric attention in Pittsburgh so was taken by helicopter (he didn’t even get excited). His symptoms pointed to a very rare (19 out of 100,000 kids are diagnosed with it in the USA) disease called Kawasaki’s disease. He did start the treatment (IVIG and aspirin) and was unresponsive (about 10% of kids that get this require 2 or 3 doses of the IVIG). He got the second dose late Wednesday night – early Thursday morning his heart rejected the dose and his heart failure got worse. However, by late Thursday we noticed (it was hard to notice because of the heart issues) that he had lost rashes and the fever was gone for the first time in 8 days (this is a sign that Kawasaki Disease was fought). By Saturday morning we could tell he was improving – even his heart (as slow as it was) was improving. Today, Monday, we are watching the rest of rashes disappear and waiting for his heart to get healthier. If all goes as it is, he will be getting a regular room at Children’s Hospital and then live a normal life (with a lot of attention to his heart condition). The only long term negative is the potential for his coronary artery to clog – but most sufferers do not have long term damage.
This has definitely been the darkest time of our lives. We have done nothing but sit by Soren’s bed and pray(barely eating and barely sleeping). I think this is the place you should come if you are ever depressed or feel like you have been dealt a bad hand in life. Even as we struggled with our lot in life – I look around and see kids that aren’t improving. I have such a burden for these parents – I remember feeling so grateful to God when we had our children and they were healthy – I didn’t even think that later it could go downhill.
Thanks for your concern, support, and prayer. I have heard from so many and had offers of help that have been so generous. I am grateful for the team at The Commonplace that allowed me to stay at Soren’s bedside.