It's 4:00 am, Bryt and I have been 'sleeping comfortably' on this pull out bed thing. We woke up this morning to his alarms going off again. His heart rate was dipping down into the 70's and had an abnormal rhythm again. Our nurse was on lunch and the nurse that was covering was suctioning a different baby. His heart rate was going up and down from 70-100, but never got up to his normal 140. I went walking around the CICU, looking for a nurse. I didn't see any familiar faces so I just told the charge nurse. A couple minutes later there were 3 nurses and a doctor in our room. They were all checking his pulses and discussing the rhythm patterns using lots of acronyms. The nurses seemed a bit confused, but when the doctor came over she asked when he got his medicine last and then told us this was one of the side effects of the medicine. It usually shows up 3 hours after they get it and he got his last dose at 1. They need to talk to the rhythm specialist again and see if he is on too much medicine now.
If we have learned anything here it is just to be patient and trust things will work out somehow. Every kid has a different story and the doctors don't have a simple 'one size fits all' method to fixing them. They each have their own individual issues and require constant adjusting. Every morning there are rounds where all the staff come and discuss his condition. They each give their own opinion and then agree as a team what the best next step is. A lot of the times, it is something they are going to try and see if it works. None of them seem to have 'the answer,' and whenever you ask for any kind of time frame, you always get "we'll just have to wait and see how he tolerates it." I think we are finally starting to accept the alarms and the constant ups and downs. This is a roller coaster ride for sure. It would be nice if we knew when the next turn was coming.
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