June 28, 2009 Update

Taylor has had a fairly quiet weekend at the PICU and Jason and I have spent quite a bit of time at home with Cameron and Emileigh. Taylor remains sedated and breathing with the assistance of the ventilator. She has experienced a few "bumps in the road" but the doctors shared today that they are seeing slow, positive progress and they are encouraged.

Friday night was not as quiet as the team had hoped it would be. Taylor looked great when we left - good Oxygen saturation and overall heart function. As the evening progressed she experienced several episodes of heart arythmias as well as a decrease in pressure and oxygen saturation. She stabilized overnight with the aid of medication and change to her vent settings.

I went to the hospital following Cameron's first Saturday swim meet! He placed second in freestyle and third in backstroke for the 6 and under age group. We are so proud of him and happy that we got to see him swim. I arrived at Fairfax just as the doctors were completing rounds and was able to talk to Dr. Shen, Taylor's surgeon, as well as her nurse for quite a while. Dr. Shen shared that he was pleased with her the way her heart was responding to the sugery but was still a bit concerned about her low oxygen saturation - at that point she was down in the 60s. However, he stated that he felt things were moving in a positive direction and that the team would work together to figure out the appropriate vent settings to best support her breathing. The overall concern continued to the be her small airway and the reaction to the new blood flow. As the day progressed the doctors changed the ventilator settings and took her off of the mixture of helium and oxygen and switched to nitric oxide. We understand now that both are a bit easier to move through the airways than pure oxygen/nitrogen mix (like room air). Anyway, her sats cam back up to the high 70s/low 80s and the doctors were please. Taylor had a stable Saturday night.

This morning, Jason and I both went to the hospital and saw Taylor. She looked a bit more puffy than we had noticed before and the team shared that they were working to increase her urine output and draw off fluid which seemed to be helping with her breathing as well. Overall she looked really good, sats were being maintained above 75 and her pressure was good. She had an echocardiogram (heart ultrasound) to see how the repair looked and how the blood was flowing. The cardiologist shared that the repair was functioning very well and blood flow was excellent! Great news. However, she still seems to be having a bit of trouble with her airways and tomorrow a CT Scan will be done to see how the airways are moving air and blood. Overall lung function is good and all of her other numbers are good so the doctors are a bit perplexed. However, they let us know that they feel she is moving in the right direction if every so slowly. :)

Jason's parents went home today. We really appreciated their care of Cam and Em for the past four days. We are going to take one day at a time and right now since Taylor doesn't need us at the hospital we are spending as much time with them as we can.

We appreciate the continued prayers and emails of support. We are all praying for continued progress for Taylor and an answer to her airway mystery. One theory is that once more fluid comes off and the vent is removed, she will actually improve. We will have to wait and see what the CT shows tomorrow...

Thanks again for all of the love and support you have shown our family. Your notes really give us strength, encoragement and a positive outlook! LOL!