Being a parent with a sick child is hard. Being a parent with a sick child who continually shows signs of worsening struggle is gut-wrenching. Being a parent watching the slow deterioration of their child and not yelling at someone out of shear fear and panic – super hard.
We are very happy to report that Rowan’s surgery was moved up to June 7th. That is 5 days sooner!
I have never been a yeller. I have, however, always been good at talking. So that’s what I did. No one likes to be yelled at, but honesty can go a long way.
When I took Rowan to the Pulmonologist on Monday, I expressed how concerned I was to him about Rowan. We discussed the fact that Rowan occasionally drops into the 50s (which he was doing during the office visit) and how Rowan is struggling a little more each day. The Pulmonologist shared my concern that Rowan needed his surgery sooner than it was currently planned. I told him I had expressed my concern, but the surgeons wanted him to have a month of space from his last acute incident. The Pulmonologist not only listened sympathetically, but offered to call the surgical team and tell them that he did not believe that Rowan truly had an acute incident and that he believes Rowan needs his surgery sooner. – So I lobbied for my son by communicating with Rowan’s health care team and asking them to share their opinions. The pulmonologist had been seeing Rowan when he had this suspected acute incident in the hospital, so he would be the expert on that incident. I believe the surgeons know what they are doing – but they also haven’t been able to see Rowan lately and I want them to have all the information I can provide them with.
Also, I called our cardiologist’s nurse repeatedly last week. As Rowan continued to decline, I wanted to make sure that it was being documented – and I wanted to make sure I didn’t let him hit a breaking point without managing it appropriately. One of the reasons I wanted to make sure that his decline was being documented is to protect him from assumptions. If there is documentation that he is declining steadily and I take him to the hospital, then I have proof that this wasn’t a sudden occurrence caused by a virus or infection that would delay his surgery.
I was also extremely honest with the nurse. I told her that I was really concerned. I used the term “freaking out” a few times. I told her that he seems to be a little worse each day and that I was really scared that he was going to crash before surgery and go into an open-heart surgery weaker than he needed to. We were set up with a cardiology appointment to check on him last Friday and the cardiologist said he would bring Rowan up at the cardiology meeting later that day to see if the surgeons would consider moving it up.
So with a call from the pulmonologist and the input of our cardiologist, and a lucky opening in the schedule, Rowan is getting moved up. I really feel like this is the best thing for him and I am extremely hopeful that we can make it 5 more days.
As a parent, I’ve tried to keep “my way” and “what is best for Rowan” separate. I did not get “my way” with this. It certainly was what I thought was best, but I trust and rely on my son’s team. I wanted “what is best for Rowan” and to get that, made sure that everyone was understanding his current situation so that they could make the decision with all the information I could provide them. If they had said “we still feel it is best that we wait to do his surgery” I would have gone with it! …I may have gone with it with Rowan in the hospital so he can be monitored.
Truth is powerful. Knowledge is powerful. I really think that the way I treated this situation shows how much I have really come into my own as a heart mom. I feel a part of the team completely now. It’s a good place to be heading into a major operation.
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