You may have noticed that I'm keeping track of Norah's weight progress on the sidebar to the right. When Norah was trach'd, we were told that she would only get to come home when she could be transitioned to a ventilator that was approved by the FDA for home use. These vents only go as low as breaths that give volumes of 50cc (think of the amount of air filling a balloon). That is far too much for Norah, so we were told that she would have to be around 5 kilos (11 lbs) to be taking in those kind of volumes.
Well, now the doctors are rethinking Norah's lung volumes. Due to her restrictive lung disease (caused by her small chest space), she isn't going to be able to take in volumes that are typical of most babies. The normal lowest ratio is 10cc's of volume per kilogram. But right now she's at about 6-7 cc's per kilo. Any higher could do permanent damage to her lungs. What does this mean? Well she probably won't be able to transition to the home ventilator until she's about 7 kilos or so. 7 kilos = 15.4 lbs for those of us living in a non-metric land. Yes, that means more patience, many more months of being divided as a family, and of course... more hospital bills.
We had a rough day yesterday. I received a phone call at about 1pm from one of the ENT doctors asking for permission to do a scope down her trach to see if there was something that might be blocking her airway and causing her distress. What distress, you might ask? Well the blue baby blues are back in full force. On Thursday night she had three episodes of desatting to the point of turning blue and needing to be bagged. When I got there on Friday, she was clearly having another rough day (her second bad day this week). She was just so uncomfortable and upset. She had a major desat while I was there alone with her, but fortunately recovered when I bumped up the oxygen on her ventilator and did my best to comfort her.
When they did the scope (they placed a camera with a light down her trach tube), they gave her a sedative that didn't seem to have much of an effect on her. She tolerated it well anyway. They said everything was good there, so we at least can rule that out as being a cause for her troubles. For now we're just going to wait and see how she is over the weekend. South Davis finally got the ventilator and is working to train their respiratory therapists on it. However, so long as Norah continues with these bad days, she won't likely be going there any time soon. Only time will tell though.