So I have reached a frustration point for the first time with the administration of my child. While CHOA is a wonderous place that so many people have given so much of their time and energy to - they are some of the worst communicators on the planet. Just for the record it is not just us, almost every parent we run in to talks about not getting the information that we need.
A very quick recap:
According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.
Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.
Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.
Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.
So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.
I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.
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