Today was the day I finally took a stand! I know I have said in the past that I had to get tough with the docs, ask the hard questions, and demand answers! Well today I finally felt like I actually did that. Before I would ask questions, but do it through sobbing tears, showing my vulnerability to the "head honchos." Today that all changed...I was one PISSED MAMA, but I can only attribute that to one amazing nurse!
After last night resulted in lack of sleep for Cohen and I due to the ineffectiveness of the three medication trials, we were basically back to the beginning again and still no answers.
We have had some rather crappy nurses, but for the most part we have been blessed with some amazing nurses. These nurses are the ones that bring comfort to you even on the most eventful days or uneventful days. They know the right things to say when you are balling your eyes out with no answers. They also are dedicated and will do whatever it takes to make sure that your questions are answered and that you meet with the people you need to meet with and not to feel embarrassed about it.
Today we were blessed to have our favorite nurse thus far in this entire experience, Sarah. Sarah is a 26 year old nurse who is wise past her years. She first had Cohen way back during the beginning of his second hospitalization and I could tell based on all she said and did, that she was not only an amazing person but great at her job! She has been with us through the ups and downs and always made us feel like we were not asking dumb questions and also explaining each step, procedure, medicine, along this crazy process. I remember one time she called me at home to explain the salivagram procedure he was going to have because she wanted to make sure I knew about it even though I wasn't able to be at the hospital during that time. We have vented our frustrations to her regarding doctors, other nurses, etc and she has always been very professional about it.
Walking in today to see her in Cohen's room, I felt at ease but also felt like this was going to be a very productive day! And it was! After having discussions with her during her in/out visits into our room I was able to voice my concerns about: the lack of communication amongst the professionals seeing Cohen, the terrible night nurses we have encountered on a few nights, the terrible contacted oxygen provider we had been given through the hospital and many other issues.
Instead of many of the nurses trying to please their patients but also keep the peace in their job setting, she took action and I am forever thankful for that. Throughout the day, people continued to filtrate in and out for various things I had addressed with her and it seemed like many more questions were answered than before and even though we are still unknowing of Cohen's condition, I felt at ease.
I met with the hospital case manager and addressed my concerns about our oxygen provider and how they have been nothing but terrible in their communication and customer service (that could be another blog in itself).
I met with the floor manager to address my concerns about the lack of diligence in some of the night nurses we have had before (really only a few but of course the negative experiences tend to stick more than the positive at this point).
I met with the pulminology team and the ENT team separately and felt completely lost afterwards. They were both coming from two different angles and often leaving it up to the other specialty to make the call as to what the next steps would be. We were back to blaming aspiration and reflux, even though GI had just said that they didn't believe this was due to that even happening. I was becoming more frustrated as some of the doctors were talking about not even wanting to do anything more to find out why he is breathing the way he is breathing, but yet we were still stuck here in the hospital! I asked her what she thought about gathering a grand meeting with all of the specialists involved so that the communication could be strengthened, myths or theories could either be put to rest or tested, and we could try to come to an understanding because we were talking about an 8 week old that has only seen his home walls for 18 days of his life! She heard me loud and clear and approached the resident who is nowcurrently working on making that meeting happen hopefully this week!
I am so thankful for her and even though there are many cooks in the kitchen I wish we could always have this one special nurse on the sidelines cheering for us!