Cancellations and Miscommunication

CANCELLATION
When we woke up this morning, we were anticipating being told a time for Reiss’s CT Scan today. They pricked her finger to get blood work so they could make sure her kidney function would not be affected by the dye needed for the test. Reiss had not had anything to eat or drink since at least 11:00pm the night before – the doctors strictly wanted her to not have anything to eat or drink after 4:00am.

Then, the nurse came in and said the CT Scan had been cancelled. She didn’t know why, but would ask the doctors. This was around 8:30am. We went ahead and ordered Reiss some breakfast at this point.

About three hours later, the cardiologist on duty came in to tell us that Reiss would not be getting a CT Scan because she would also need a cath procedure to look at the pulmonary arteries and they wanted to do both at the same time instead of sedating her multiple times in a short period. So, according to him, we should just go home and we could come back in the next 1-2 weeks. Additionally, the cardiologist said they really may not ever know the real source of the bleed. This was what we thought we were here for – to find the source – and we had talked to other doctors who we thought were on the same page with this.

This was heartbreaking. We thought we were on track to get some tests done while we were here and find answers. She continues to cough – more yesterday than days prior – and she puked last night (no blood). What if she coughs up blood when we go back? Do we have to go through the Springfield Mercy ER, then transported to St Louis Children’s?

We asked for the cardiologist to give us a better idea of how soon we could get in the cath lab. If it was early this week, then we could just stay. If it was late in the week, we may stay local. Additionally, we asked to have a meeting with the ear/nose/throat team, pulmonologist and cardiologist all at the same time, in the same room.

This afternoon, we were told that Monday was completely open and she didn’t see a reason why we would not be able to get it scheduled for that day. As of this evening, however, we have not received word that the Monday appointment was firm. We have also not heard anything on whether or not the meeting will happen with all three services. Hopefully we know more tomorrow.

PASSING THE TIME
With nothing going on tomorrow but following up with doctors, we have a pretty uneventful day. If it is warm enough. We will go up to the roof top garden.

We did get to go out and about today around the hospital, which helped with everyone’s cabin fever.

We played in the play room

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We found Reiss’s name on the monitor that shows “honor gifts”. It was from her 1st birthday party; where all gifts were donated to 7West, the NICU and CICU. It was fun to see that.

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We looked at fish and played in the halls a bit.

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Reiss also passed the time being silly in the window. The nurses loved it.

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Most importantly, Reiss made friends with Mildred – the keeper of the toy chest

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