I want to thank everyone that has called, texted, or emailed today to get the results of the meeting. I needed a few hours to process everything and I thought I would answer everyone as a whole. They met us on a Saturday since we have missed so much work this year so that was very accommodating. They led us into a conference room where they asked us a lot of questions about our life. I felt like we were in a therapeutic sessions because we talked a lot about how life is and how it was prior to the surgery. Both of the ladies there really listened to us and took pretty extensive notes.
After they listened the physicians assistant explained their purpose and what they want to do. I related to her and I appreciated her outlook on life. She said children that suffer major neurological injuries like Jude have ups and down. She held up her hands and said that Jude's baseline may have been up here but there are things or major incidents (the surgery) that cause large dips. Sometimes the kids come back up to their prior baseline and sometimes you come up to a new normal that was much lower than the first. This is Jude's situation. I expressed that I always use the term "new normal". She then said that as life goes along they may come back up, they may not, or they may continue to decline.
Since I am new to this and I know some parents that are reading this are not bear with me. Over the course of the meeting I began to realize that their job wasn't to get Jude better. Their job was to help us manage the level of care Jude needs for his new condition. I guess I always knew that Jude's condition wasn't ever going to get better but it was realizing he just needs a different level of care now. I told the PA that I appreciated her explanation of how children sometimes decline and how some can regain their prior normal. We then talked about the body and what it needs to function. I told her again I appreciated her explanations. That sometimes people preach to me about miracles when sometimes people just need to realize our bodies are made to function certain ways. When they don't function properly we encounter a decline in health. She said, "sometimes those people don't realize the miracle is sitting in front of them!". I got a little teary and explained I say that all the time........that our blessing IS Jude and taking care of him.
They then asked us the hard part. If we have thought about if we would want them to take extraordinary measures if Jude should ever get to a point that his heart and lungs stop. Immediate tears from Mike causes big tears from mom. We explained we have talked about after but have never crossed the bridge to think about something happening and really don't want to. She explained some more items that were hard to hear and then sweetly told us that preparing can sometimes help a moment of panic in a hospital room.
We then created a plan of action. We had to decide if our goal is extending his life, comfort measures, a good quality life, etc. First and foremost we want to control Jude's pain and his attacks so therefore they are contacting the pain management team. With pain management intervention she explained that other parts of his body maybe affected. We already know that since Valium decreases his respiratory. So this isn't something we are unfamiliar with. They are also going to work on getting Jude to sleep better so we can sleep better. They are going to talk with all his doctors so EVERYONE is on the same page. The PA was so interested she even wrote down Mike's words of "Have the doctors check their egos at the door". Mike and I both praised Jude's neurologist on several occasions (Dr Riela) and explained how the personal interest he takes in Jude's life make a difference in the quality of care he provies. I think this is something they will relay to Jude's other doctors. So we will get Jude pain care, get him to sleep better, and get the doctors on the same page.
They were kind and informative and seemed to truly care. They listened and I think we will see results. Again it's a different level of care but I think Jude will benefit from it.