Puzzle

We are so happy to have Conley home and the family all together again. On Friday, when we left the hospital, Conley was back to his old self chatting it up and flirting with the nurses. But, as you know, we started chemotherapy last week and we were not sure what to expect moving forward. The side effects were described to us, and most of them were pretty similar to what we have already experienced with renal failure, such as vomiting and fatigue.

On Saturday, we noticed that Conley was becoming more and more fatigued and tired, and sleeping most of the day. He also started having a very difficult time holding up his head, sucking on his pacifier due to weakness in his mouth and not moving his limbs much. But, he was still showing smiles and making eye contact. I called the oncologist to confirm that these symptoms were likely a presentation of the chemotherapy side effects. And hr agreed. But, by Sunday, something was definitely wrong. He wasn't showing affect, making eye contact, smiling or tracking others. He seemed to stare off into space as if he was blind. We knew one of the side effects to chemotherapy was blurred or double vision, so we thought this might be the case as he was obviously scared when someone put him down, but was comforted by our voices. We also noticed some tremors, excessive yawning and other symptoms of withdrawal. I called our palliative medicine doctor (yes, we have many to call and sometimes figuring out which one to call is difficult!). They agreed his presentation looked like withdrawal and was somewhat frustrated that his methadone treatment was weaned so quickly after being discharged from the hospital. All that said, we had to meet him in the ER so he could evaluate Conley and prescribe us a prescription of Methadone to help with the symptoms. The only problem with Methadone is that is takes up to three days to reach a therapeutic level, so Conley has continued to present with the symptoms mentioned as we just wait for the effects to take place. It is so excruciating as parents to see your normally happy, smiling, flirting and very engaging baby look like he has no emotion, can't see and freaking out evert time any one puts him down.

Yesterday was Day 3 of the Methodone and we have not noticed much change to Conley's condition. He has started showing some signs of improvement including sucking his pacifier and sleeping better, but he still presents as if he cannot see, move his limbs and only exhibits minimal affect. There have been many theories about why Conley is presenting this way, including an over prescription of an antinausea medication for chemotherapy (that did not take into account his renal failure and inability to waste medication on his own) or maybe too much chemo medication, but all in all, these theories are being disapproved one by one because by this point he should be back to his normal presentation. So the puzzle continues, which is concerning to us of course. We are hoping to gather other opinions as to why he presents this way and hope that is it not something permanent.

On a side note, today I am back at Dell with Choice so he can have a range of screening procedures in order to rule-out or confirm any medical issues for him. This was a planned day due to several potential genetic issues that came up during Conley's most recent hospitalization. Please keep the boys in your thoughts and prayers.