Tuesday, September 27, 2011

I know this can be stressful

This morning as soon as the boys were off to school I headed down to pick up my sister who just came home from her mission. She graciously agreed to hold down the fort at home so I could dash up and meet with the cardiologists who said they would come in for Aaron's consult this morning. Morning turned into afternoon. Rounds were late but everyone concluded that cardio needed to be "actively harassed" until they came over. At 1:30 they finally called (after the harassment had begun) and said they would be over sometime in the next 2 hours. They finally came about 2:30ish. Not the Attending we had expected, the one who would be doing Aaron's cath, someone we didn't know. Our nurse even asked him if he was a new fellow. He asked me what I understood about the procedure and what had taken place in the time leading up to them coming. I told him about Aaron's missed appointment date last week and him contracting the parainfluenza bug. I told him we had been in constant contact with the cardio department and had been given requirements for Aaron to be transferred for the cath procedure. I told him that Aaron had met all the requirements and we were ready to be scheduled and taken over.

He examined Aaron as did the fellow he brought, the one who backed out on us yesterday, she apparently didn't want to come by herself. What!?! She then examined Aaron. Then they both looked up his charts for the last several days and weeks. He asked me a few questions here and there and then told me he had reservations about Aaron having this procedure at this time. He said they normally didn't take kids who had the flu within the last 6 weeks because the results may be skewed and that he thought Aaron's vent settings were on the high side. I again told him that from there recommendations Aaron had to have 3 negative cultures from the flu, which came from the lungs I might add and were done over a week ago. He then asked if the doctor who was going to do the procedure knew about the flu and I said yes, his team were the ones who set the requirements.

He then said he didn't think they would do anything now but would have to discuss everything with the other doctor as he would be making the decision. (Why the heck isn't he here then, why are you here????) He told me he would get back to me. I asked him when that would be. He said, tomorrow. I literally bit my tongue from chewing the guy out! Tomorrow, you get that we've been waiting for you for more than 24 hours and you will get back to me. Ahhhhhh! He then looked at me and could tell I was pretty irritated and then said, "I know this can be stressful sometimes." I just about kicked him out of the room at that point. I didn't say a word, I just glared at him. He left quickly after, before my tirade started.

After he left, several of the nurses came in to find out what happened and were just as frustrated as I was. Our sweet nurse today listened to me vent my frustration repeatedly. She was great, she went and told the N.P. that when cardio calls that I wanted to talk to them personally and that we all requested the doctor who was supposed to be here today to actually walk over the bridge and assess Aaron himself before making any judgement calls.

What really gets me is that they don't think that my time or Aaron's time is valuable. I made arrangements for two days straight to meet with them and they put Aaron off again. I know they are busy which is why when they say they will come I set aside a large block of time but when they do stuff like this I feel like sending them a bill for my time they have wasted! There are quite a few issues that need to be addressed with Aaron's care and this is the one that needs to be checked off right now. We can not wait 6 weeks for this 6 weeks is a lifetime to Aaron. We are hoping this procedure gives us the information we need to make the big decision on what to do for Aaron, keep going or allow him to return to heaven. Liver and bones don't make a difference if the heart and lungs can't function on their own and this procedure will begin to unravel that information.


Sant Family said...
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Claudia said...

While I was sat in the hospital this morning wondering why I was there having a glucose tolerance test when I know I don't have diabetes. (I know, I am on the steroids, but it just was playing in my head that they were trying to think of more exotic tests they could try on me considering they already admitted they don't have a clue how to treat my actual condition).
ANYWAY, I was thinking about Aaron and wondering how he was doing. My baby's heart is still beating strong but we wait to see what they will say on Friday. The UK are not so hope inspiring and I know will push me for a termination if the baby has not grown much, I also hope that the absent flow has not turned negative on the dopplers... I so badly don't want to be pushed into that corner, again. So little Aaron, hang in there little man. One day at a time......big hugs to you...