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.

Wednesday, May 28, 2014


Alex had his follow up appointment today.  The doctors have been calling frequently to check in on him. They also asked that we were prepared with a bag packed JIC. With the holiday and the distractions of life we had a very enjoyable weekend. Ry started back to school this morning and she was thrilled to go. She even had her outfit planned and her hair do picked out. I got everyone to their "helper" and we went up. After being looked at and a serious heart to heart, Alex was admitted today. The doctors believe that even though he looks good on the outside, like, he engages in conversation, is happy, and silly..... His insides are very very sick. We needed to start him on a medicine called milranone. This medicine improves his function, but it doesn't help his tricuspid regurgitation. So it was a true conundrum about what should be done. Believing that this is a better step than a crisis, he got a room in the CICU. Another good thing,  his white blood count is up. He responded to the medicine that was given. Tomorrow morning he is getting a special line called a Broviac. Then his team will determine if his dosage is right for coming home. Or, if he needs to stay in the hospital till his healthy heart gets here. He is also using oxygen to help his body relax. Today he ate one can of tuna, three bowls of his beloved Ramen noodles, two cups of hospital pebble ice, two slushies, and one bag of Doritos. He loves room service! We also built Legos together, Miss Jen came in from child life and we did medical play to help him understand what would be happening in the next couple of days. He seems to be in good spirits.. 

1 comment:

berrymom said...

There is not a prayer in our house that doesn't include your family. We love you so much and look to you as examples of great faith.