They are going to wait until tomorrow to try and take the breathing tube out. Sonia is doing OK, but they feel she needs to get some more fluid off before they try to get her off the ventilator. Her blood gasses were a little off, so they will take today to get her where she should be with meds & vent settings. If all goes well, they will try to take her off tomorrow.

She is off her Morphine and “Medaz” and now on a different pain med called “Dex” for pain management. She seems to like it and appears to be comfortable. In fact they halfed her dose after she started because she liked it a little too much. My daughter, the drugie!  Her fever is down, but she has some severe bruising on her left arm from a previous arterial line that had to be taken out.  Someone will be looking at it today though.

No news will be good news today. It should be a boring day for everyone as she waits until tomorrow.

Something else I have come to appreciate during all this is patience and time. So much of what they do here is give kids time. Time to heal on their own and time to live their life. We are so used to drugs and treatments that “fix”, but the majority of what Sonia has been through has been to give her body time to heal. ECMO kept her alive, but it is also to give her heart time to rest and get stronger. Even the surgeries she has been through are to give her more time. The 3 surgeries with HLHS are not a “fix” but a way to buy time. The transplant in particular is not an end in itself, but rather a way to buy time until there is a better medical solution or until she will need another transplant. I may be rambling a bit, but I just wanted to pass on that my perspective on time has changed dramatically.