Busy week

We've had a very busy week.  Overall Oliver is doing well.  He's had some rough days as his sedation meds get weaned down, but he continues to do well breathing on his own off the ventilator (he's "sprinted" for up to five hours now, without any trouble!)

We've also been in four hospital rooms in two wards in the past eight days.  It's funny how such little things can really get terribly annoying, even when Oliver is stabilizing so well.  Thankfully we are now in a room right next to the nurse's station in the "intermediate care" ward, so it still feels like the nurses can see Oliver pretty easily even though he has his own room, unlike the more open feel of the PICU. 

We've been blessed by several sweet visits from friends, including one that caught this darling photo of Oliver. 

They were also finally able to get Oliver in for the MRI on Wednesday.  We got basic results on Thursday and I got to speak directly to the Opthamologists and Metabolics doctor today.  Essentially the scan showed abnormalities consistent with a mitochondrial disease and that correspond with his current symptoms:  a small, atrophic optic nerve (he squints in response to bright lights but doesn't respond visually otherwise), his brain overall has a lower volume than it should for his size and has a "shrunken" appearance (brain development requires a lot of energy which would be limited with a mitochondrial disease, and it looks like his brain wasn't able to keep up as his body grew), and there were several hyperdensities (abnormal "bright" spots) in the parts of the brain that control respiration and body temperature.  If a mitochondrial disease is limiting the energy available to sustain his cells, it may be that the respiratory distress that got him admitted here brought on a metabolic crises (evidenced by the spikes in his lactate) and his body couldn't support non-vital, high-energy demanding systems (like his eyes) while his vital systems needed more attention, causing some of the cells along his optic nerves to die. The MRI results can't lead to a diagnosis of a mitochondrial disease (we're still waiting for the DNA tests for that, due to get back to us by January we've just learned), but it confirms that it is still the best explanation for Oliver's condition. 

We're still aiming for a discharge date of December 10th, so next week should be busy again with getting the extensive discharge checklist completed in the hospital, settling arrangements for getting the girls, our vehicles, and stuff home, and making sure everything is set up and ready for us at home between the two home health care companies we will be working with for the in-home nursing and medical equipment. 

We are doing still doing well but are getting very tired.  It will be so good to be home again soon.