Update

Hailey had a rough day. Her heart rate was 215 and climbing and she got a 105.8 fever. They decided to re-intubate her (put the breathing tube back in). 

Every time they have to intubate someone there is a risk of cardiac arrest. There is even more risk with Hailey's complicated anatomy and the fact that she was looking so sick. 

Before they intubated they pulled us aside and asked us to decide what to do in the event of a cardiac arrest. We of course wanted them to try CPR and ECMO if the CPR didn't work. However, since she has been on ECMO before, there is a good chance that she no longer has the option to be on ECMO. They told us that if she went into arrest, they could try ECMO, but if it didn't work they would just stop. 

If they didn't intubate she was at risk for going into arrest anyway from her high heart rate. We gave consent to intubate and cried and prayed. Ben gave her a blessing and then we sat in the corner and watched them put the tube in. It was a long 15-20 minutes watching them, but in answer to our prayers, it went fairly smoothly. 

Her temperature is a little lower now and her heart rate has come down to 180. They are searching for reasons for this extremely high fever. 

I also found out that yesterday's incident is considered respiratory arrest and they had pulled the code alarm. Apparently there are 2 kinds of coding--cardiac arrest and respiratory arrest, which, if left unchecked, will lead to cardiac arrest. It has been a hair-raising couple of days. 

Now they are kind of struggling to find a good place with her blood pressure. It is low at the moment. 

We are doing fine. It was very stressful and scary in the moment but I think we are okay. We are just praying that they can figure out what is making her so sick. Love you all!