Saturday

It is 4:30 pm and I just got home to sleep a little bit. I was with Aden last night and it wasn't a good night.

From a medical perspective, Aden is progressing nicely. From a parent's perspective, things are still not well. The intellectual part of Dave and me comprehends this illness and its treatment, and trusts the physicians entrusted with Aden's care. The intuitive and feelings parts of us keep questioning - WHY these symptoms STILL??? Tomorrow is day 14!!!??? This should be COMPLETELY OVER, NOW!!!!!

Yesterday Aden's IV was removed because of swelling in his hand. The doctor wanted to try going without it, as this is a step toward home. Overall Aden did well with that.

The most significant problem is the fluid in his chest along the bottom right side. The doctor assures us that it is not an abscess or an infected patch of fluid, but nonetheless, it continues to cause fevers, and significant pain, particularly in the middle of the night when he has acute episodes. These episodes were treated with IV morphine before, but the removal of the IV means that the oral pain medication is given now. That medication works more slowly. The removal of the IV also brought efforts to use a less harsh pain medication (in addition to the acetaminophen and ibuprofen - these by the way are scheduled every 4-6 hours and do NOTHING for the pain...). Unfortunately that medication did not work and this morning Aden again was in so much pain that the physician was paged. For nearly an hour the pain was horrendous and finally the physician gave him oxycodone. That seemed to help, but obviously such strong medications also have side effects. Aden has been sleepy and uncomfortable today, as well as coughing up blood.

Like with most things, Aden is very communicative and descriptive about all of this. Of course, his descriptions include metaphors and similes linking his experiences to the animals he loves to study and discuss. The not-so-bad pain is "like an eel just slithering in my side." The pretty bad pain is "like a fish flopping hard against my side." The REALLY BAD pain is "like an eel electrocuting me inside." Yup - can vividly imagine all of those experiences not being very pleasant.

We are not used to seeing Aden in pain or complaining of not feeling good. He is usually so strong, so sparkly and so able to handle aches or illness. Dave and I are very worried about being able to handle this pain at home. The doctors have made it clear that it is something that will continue as long as it takes the fluid to decrease, which could take weeks. Hopefully we will see continuous improvement, but it has become obvious that discharging Aden from the hospital to home means that pain management, medications and rest will be ongoing there rather than returning to a relatively normal routine and comfort level.

Today the doctor said we might consider discharge tomorrow if Aden reacts well to the oxycodone today and through the night, if his fever is low or gone tonight, if his labs tomorrow morning show that his infection continues to respond to the antibiotics for the pneumonia and if he doesn't have a significant increase in the coughing up blood... It will be nice to be home again when we are able to manage things here. The doctor thought going back to school might be possible at the end of the week. Aden misses his friends and classmates and happily completed some homework yesterday. I was hoping to make a dent in more of it today, but he has been feeling pretty bad, so maybe tomorrow.

I'm exhausted and signing off for now. Perhaps at the next post we will all be home.