I'm sitting here in the dark wondering...It's 2AM! Why am I still awake? Why are we here? Why do we have yet new worries now on our plate?
Jordan is waiting for another dose of morphine but is snoozing now. She is just plain pooped but can't stay asleep. We know her stats are good and she's not on any meds for her ticker but she's on morphine every 2 hours. It's frustrating because she just doesn't know what she wants and we can't really tell if she's in pain. AGH! She doesn't want medicine. Good thing she's got what...I think I counted 10 lines so needless to say PLENTY of ways to get it into her system with out her knowing it. For her lines, she has:
1. 6 in her neck. This is her PICC line and goes directly to her heart. The best way I can discribe it is 2 "panels" of 3 ports (I don't know if this is the right terminology but I think you understand what I mean). She has her blood work drawn here and her morphine put in here.
2. An IV in 1 hand. Here is where she's been getting her antibiotic.
3. An IV in her other hand. Doesn't lead to anything right now.
4. She also has an artieral line in her wrist. This has 2 ports.
She's been definately needing the O2. We tried to start getting her off of it because she just wasn't having that canula stuck in her nose. When she has it on her O2 is in the mid to low 90s. When she's off, it definately dips in the 80s and when she's mad, it dips even lower. I think I've seen it as low at 68 now but it jumped back up fairly quickly. So instead of the canula, she's getting blow by. This is where they let the O2 run from the mask into her face. While she still gets a bit annoyed with it, she's at least not trying to rip it out of her nose!
She is also has leads on that constantly tell us her blood pressure, breathing rate and how deep her breaths are, venous pressure, heart rate and O2 rate.
The other news we heard today is that Jordan's journey with CHDs is definately not over. What we thought was a membrane was actually more scar tissue than a membrane. Dr Davis was able to cut most of it out but it is still narrow leading to her aortic valve. THEN there is the aortic valve. Dr Davis has told us that she has a bicuspid aortic valve. Typically this means that she has 2 leaflets instead of 3 (the valve looks like the Benz logo normally). After talking to Dr Scholz, we found out that it is more of a hybrid of a bicuspid valve. It is more at the outside of the leaflets where it is fused together just a bit. SO again-more of a hybrid problem for her like her AV canal. But definately more of a worry for me.
The good news about it is that it isn't bad enough where we will have to restrict her activities and "normal" everyday life. She still won't be on any medications for now either. It may need to be replaced still later down the line but who knows when. That is in Jordan and God's hands. We will know more as the week unfolds too.
Well she is starting to stir again! I will post again later.