>> Friday, July 3, 2009
We like stable, but would prefer progress and still don't have much really. Kamryn rested most of the day and was a lot less agitated. That's good to see, but her vent pressure and rate are still higher than we have seen in previous days. They did lower the rate tonight to see how she would react and once again her CO2 went back up. I talked to the doctor the other day about her being incredibly sensitive to rate changes, even when they are small and wondered if we should focus more on pressure (PIP). He felt rate was a better option right now. This is the 3rd time we have seen the rate change push her numbers higher so I plan on asking again tomorrow if we can focus more on weaning pressure than the rate. I'm not a doctor, but I feel like she is telling us what she needs. We'll see how that goes tomorrow.
She still seems to be tolerating her feeds at 1 ml/hr. To put this in perspective, this equates to .8 ounces over a 24 hour period which is not much. Sunday we plan to move this to 2 ml/hr and continue to build very slowly.
She definitely has less swelling today in the face which is great to see. The only drawback is that her body also loses fluid and you can see her chest really working hard on the vent when she gets agitated.
Kamryn has another primary nurse, Tamara, who has been so wonderful to Kamryn and us. She is incredibly thoughtful and is so attentive to every need Kamryn has. We just feel so confident having her on the team. We have been so fortunate to have 4 incredible nurses sign up to care for our little girl whenever they work.
Based on what we have seen, I really am starting to believe that this road to getting off the vent is going to be long. My gut tells me we have another month at least on the vent if not longer. That kills me. I know this is her life line, but it is also a monster that beats on her fragile lungs and no one knows the extent of permanent damage that is being inflicted on them. It's a necessary evil, but it's difficult to not think about the long term consequences.
We had another visit today from our Sunday School class. Melissa and her mom brought us a great dinner and gas money :) They are truly wonderful people and so kind. We have been truly blessed by our friends and family!
That's about it for tonight. We will be up with Kamryn all day tomorrow and will let you know how she is doing tomorrow night.