Wednesday, June 30, 2010
The Rainbow Connection
This has been a week of ups and downs, no surprises there. Saturday night she did an incredible job with her O's. Sunday was a day filled with record high CO2 levels and reintubation for a blocked tube (mucus build up) along with other various issues. Monday her CRP was back up but they were waiting a day or two to see where things went. Monday night her CO2 was through the roof again but this time there was no obvious cause. Adjustments were made, repeat blood gases taken and no improvement. We went home to tuck Annie into bed and planned on having one of us return if she did not turn around.
While I was tucking Annie in Steve said "Honey, you have to come see this rainbow!" I picked up Annie (it would be very poor parenting to deprive a child of a good rainbow sighting in favor of sleep) and we all went outside. Once again during a time of great worry we were given a gift in the sky to remind us of the wonders of the world. The phone rang an hour later and Natter's CO2 had come back down so much that they were able to return her vent settings to where they had been.
My niece is visiting this week to help with Annie so I am getting extra time with Natalie. Yesterday she had a very stable day and everyone was pleased. I changed 3 poopy diapers and helped with taking her temp, etc. That is about all the physical contact I get with her and I treasure each bit. The nurse sent us home telling us to celebrate that she was doing so well and that we could have a night without worry. Hah! By 8PM she was going up in her Os again for no known reason and had difficulty through the night.
That has been our week. We have another care team meeting this afternoon. We are talking about trying another round of nitric oxide therapy if she does not improve on her own in the next few days. It is not normally used when there is no evidence of pulmonary hypertension but we are desperate so it is worth a try. We are also making arrangements for another hospital to consult on her case.
Thank you for all the support, comments and cards. We are blessed as a family to be surrounded by so much love.