No room at Children’s Hospital again today. We could go any time though – even throughout the night.
I asked the doctors here if we weren’t waiting to get to Children’s, then what would be the plan for Amanda. So here’s the scoop. Even though her CO2 was down today, it still is at a dangerously high level. She is also using 3L. of oxygen during the day – so she is currently oxygen dependent. They are watching to see if the CO2 level can get down to normal levels. They are afraid if she goes home, it would work its’ way back up. When CO2 levels in the blood get too high you can go into cardiac arrest. The doctor feels that Amanda’s multiple handicaps, small size, and all the other contributing factors have just worn her down through the years. He doesn’t expect a full recovery – that she’s been breathing with comprimised lungs for a time now and it’s finally catching up to her. From my perspective, I believe there is a contributing factor – the neurological issue – that has contributed to her problems. It is my gut feeling that until I rule out any breathing problems due to central nervous system issues (like a plugged shunt or a Chiari issue – see previous blogs if you don’t know what this is) I will not accept that her lungs are failing her.
So that is why we are still here and not waiting at home. The doctors are respecting my desire to go to her previous Neurologist to check out those issues and even stated that there are good pulmonary doctors at Children’s. He also said he’d be happy to talk to them. If there are no contributing Neurological problems that we can fix then we have to go back to dealing with strictly a pulmonary problem.