Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, October 18, 2015


Alex had a pretty good night. He has needed a little oxygen at night to help his sats stay up. He overall feels like he has flu like symptoms. Tummy ache, fever, fatigue. This illness is really kicking his bum. I should note that this is not just the Aspergillus(fungus) but the rhino and noro viruses. We have been careful to protect his kidneys because they can get unhappy pretty fast on the two antibiotics. To further protect them, one of his antibiotics was changed to Voricanazole but then he stayed on caspofungin. 
His CT showed no fungi in his brain or nasal cavity. They did see something in his lungs but at this point believe it to be related to rhino. 

So far they have been able to remove about 148 mls of infection. I had someone explain to me in regular lady terms so I could understand how much that really is.. So 30mls (or CC's) is equal to 1oz. That is close to 5 oz of fluid infection. A cup is 8oz so a little more than half cup. Eeeewww right? For a little guy, that's a lot of infection. 

Alex will be having the surgery to remove the infected portion of his liver on Tuesday by Doctor Rebecka Meyers. She is THE BEST in the country.. Right here at our very hospital. Another blessing for our family. 

One question that keeps coming up; how in the heck did he get this mega fungus? 
Well, this is an environmental fungus that is in dirt, he could have breathed it in by being outside or inside (or upside down) it just is there. They say we can actually have these crazy fungi in our bodies, a immunocompetant person is able to keep it under control. Alex has such a weak immune system things like this can easily get out of control. So nobody "gave" it to him. We can't live in a bubble and we can't expect everyone to treat him this way. So we will do what is necessary to get better and keep living to the best of our ability. Every now and then get a serving of humble pie. 

Thanks for every prayer, text, call, email, visit, child care.. It seems we ask a lot of you all so much. Just know that we love you and are thankful to have you in our lives. 


Hillary said...

Love love love you guys. Thinking of you. 😘

auntiejenni said...

Continuing so many prayers. Calling our temple early. Love you all every one!!!