Elizabeth did well yesterday with the PH probe, or as well as you can with having a tube stuck down your nose and throat for 24 hours. We should have the results of it tomorrow and a decision will be made on whether or not she needs the surgery on her stomach. Hoping for good news, but at this point we are preparing for it either way. Once we get a decision on the stomach surgery, we will also get her 6 week (late) bronchoscopy schedule for next week. And if needed the surgery on her stomach will be scheduled at the same time, so she only has to undergo anesthesia once.
Today we changed her trach again. The Dr wanted to try to downsize again to a 3.0. But Matt pushed the idea of just using a different 3.5 trach that has a different type of cuff. The "new" trach is the same diameter as her old one but the length is shorter and the cuff on the inside is much smaller. The idea behind this is that she can adjust to this change and then once she is used to it we can start downsizing the actual diameter. The Dr thought it was a good idea too. ~ Matt is so smart sometimes :) So Matt and I changed it out this morning and then she was able to do 8 hours on the passy muir valve with no problems. Her CO2 levels were good today as well. So progress, slowly.
In other news, I was able to help LifeGift tonight with a ceremony where they recognize donor families. I can't even truly explain the feelings I have when I see these families and hear their stories. It breaks my heart to see the sadness as they remember their loved ones, and a sense of guilt overwhelms me. It reminds me of our donor family, everyday that I look at Elizabeth and see her smile, get to change her clothes, or just watch her sleep, I am reminded of their loss. And I am SO very thankful that they chose to save my daughter's life.
While at LifeGift I was also able to meet the nurses who went with the surgeon to get Elizabeth's new lungs. Its pretty neat to be able to meet the people who helped make all of these updates possible.
We are so thankful for everyone who has helped us get to this point in our journey. We know the future is still uncertain, but in reality, its uncertain for all of us no matter how healthy we may be right now.
Life truly is a Gift, and each day is special ~ whether your in the hospital or not ;)
No comments:
Post a Comment