better days

Malachi has certainly seen better days. Yesterday and last night he did REALLY well. When the night nurse left her shift this morning, his oxygen support was down to around 73% or so. He was really making great strides. Today, he was a completely different kid. All day he was having trouble keeping his sats above 60. Starting early this morning he was kind of parked in the 50s. Early this afternoon he dropped to the 40s and wavered in that range for about an hour or so. Either at that time or shortly thereafter his left arm and left leg were shaking uncontrollably. The nurse and fellow were very certain that this was a seizure or seizure-like activity. He was given a dose of phenobarbital for that behavior and he was also started on gentamicin and ampicillin--two antibiotics "just in case" there is an infection. They ordered blood cultures x2 and a urine culture and a CBC with differential to rule out any abnormalities which may indicate an infection. If those cultures come back negative in 48 hours, the antibiotics will be stopped.

I arrived on the scene at about 2:00 this afternoon. The module was still closed (John had driven up earlier that morning and they closed it basically as he was trying to walk in the door of the module), so I waited. Amazingly, I was able to formally meet another mom of a kid with CHARGE--her son Gannon (one-year-old) is currently in the hospital with respiratory issues, please keep him in your prayers as well. Obviously, it would have been better to meet her on different terms, but this is where we are and I was extremely thankful for the conversation. It's nice to know that we are not the only ones walking down this road. CHARGE kids can make it.

So we wait. The EEG didn't show anything too exciting. However, it was taken almost 4 hours after the seizure activity AND after he had been given a dose of phenobarbital, so I'm not so sure what it's exactly supposed to reveal after that. The doctor who analyzed it quickly said that there was no seizure activity and mild encephalopthy--the same findings as his EEG a month ago which had been ordered for suspected seizures.

No one knows why he can't keep his oxygen levels up. No one knows what triggers his drops. He used to have desats with cares (changing diaper, taking temp, shifting positions, etc). Now he desats during sleep and his sats rise with cares. Like doctors have repeatedly said, "This is how he was created." But, from a human vantage point, Malachi doesn't make sense.