Home, Himself, and Happy

Crewe arrived home from the hospital yesterday! He is smiling, crawling, and acting remarkably like himself. Thank you for the many prayers offered in his behalf, his quick recovery is no small miracle.

Three times was not the charm we were hoping for when we took Crewe to the ER at Phoenix Children's Hospital on Saturday for the third time last week. Instead of just fluids, this visit bought him an admission ticket to the "trach floor" of the hospital. In addition to being dehydrated, his oxygen saturation levels were low and he required oxygen.

During his Wednesday visit to the ER, Crewe tested positive for a nasty respiratory virus that has been making life miserable for a bunch of folks in our area. To most, the metapneumo virus manifests itself as a bad cold and cough. However, to babies, especially those with trachs, this terrible RSV cousin can be life threatening.

The ER and floor doctors painted a scary picture Saturday night as they reviewed the results of his Wednesday trach culture. In addition to the virus he was already fighting, they found three organisms growing in the culture. The docs told us that his situation was likely life threatening and to expect him to be in the hospital for 7-14 days. They quickly ordered two very powerful, broad-spectrum antibiotics to be given immediately via IV.

The extreme reaction of the doctors was disturbing to our "parental intuition." Given that one of the antibiotics prescribed was the medicine that permanently destroyed the little hairs in my grandpa's ears and made it necessary for him to walk with a cane for the rest of his life, I was especially uncomfortable with the treatment recommendation. None of the doctors could actually confirm that he had a bacterial infection, but they wanted to treat the organisms like they were.

As parents without medical backgrounds (other than what we've learned since Crewe was born) we found ourselves in a very frustrating position in trying to reason with the doctors. We were told that one of the organisms in particular is so dangerous that if we didn't respond immediately with the heavy duty antibiotics, he would be at immediate risk of organ failure and ultimately death. Very. Scary. Stuff.

At about 2 am we came to an agreement where they would administer a single low-intensity antibiotic until the infectious disease doctor could evaluate him the next day. It turned out that our opposition to the doctor recommendations was inspired as the infectious disease doctor said the dangerous organism the other doctors were so worried is actually present in all trachs and should not be treated. Phew!

Thanks to many prayers and the assistance of the medical device we got in Dallas, Crewe made a quick recovery. The doctors were in disbelief that his lungs were doing so well. They ordered an additional chest x-ray because they didn't believe his lungs could be clear as the x-ray indicated. They also switched out a few stethoscopes searching for one that "worked" because they weren't hearing the wheezing and crackling they expected. It's nice to have our baby home.