First off, I met with my ENT doc this morning and received some good results from the biopsy. The "enlarged lymph nodes" that I had were not actually lymph nodes. Instead, they were fatty-fibrosis tumors that were setting up camp exactly where my occipital lymph nodes are located. This is good news...that there were no cancerous cells seen in the pathology of the tissues tested.
This was also consistent with the findings of my previous biopsy before Christmas. While the doc assumed that he didn't actually "get" the lymph node for biopsy then and required an additional removal and biopsy of the remaining "enlarged nodules", we now know that they were not lymph nodes that were enlarged. Rather, they were just benign tumors.
Usually, these types of tumors originate in the breast, arms, legs or back, so seeing them on the head kind of threw us all for a loop. The good thing is that the cells are benign in nature right now. If any additional tumors pop up, we will go back and have them removed. But barring some side issue of a newly formed heart murmur that needs a little bit of attention, I am healthy. That is such comforting news, as I don't exactly know how I would juggle Nate's appts and additional ones for me together.
In departing, I informed my doc that I knew that I needed to loose a few pounds but he shouldn't have called my tumors "fatty" also. I have loved messing with him. He's a good doctor with excellent bedside manner, and I am once again so thankful for the medical personnel God puts in our lives. A bit of advice I often tell others...having friendly relationships with the doctors who take care of your kids (and your own doctors) and learning a bit of personal information about them (talking about their family, kids, hometowns, etc) is always extremely helpful in this journey. It takes a bit of work and time to build bridges between the medical community and yourself...it only takes a few words or actions to burn those bridges. Relationships are important. Doctors and nurses are people first. In witnessing so many rude comments and frustrations from adult patients toward our medical community over the past few months, it makes me want to mention this more now.
For some different info, yet still good news...Nathan trialed a conserving device today on his oxygen tanks and PASSED!! He was able to trigger the breaths on the conserving device and keep his sats up. His heart rate rose quite a bit (140-150) while he was walking around, but his sats stayed at 98 or above and his heart rate dropped once he rested some. So, we were able to keep the conserving device!!! This means that a smaller tank will last him a whole lot longer, depending on how many breaths a minute he is taking. We are also still trying to get our insurance to approve a refillable concentrator with M6 tanks (really small ones), so this is one step closer to him being able to be completely "free" while on tanks. Depending on how heavy they are, he could potentially carry a tank in a backpack on his back with this conserver...if we can get insurance approval for the refillable concentrator.
That would definitely make his and our lives easier at the moment. Not complaining here with our situation, but I know he would do so much better at a playground with oxygen on rather than our current solution of taking him off O2 for different circumstances, especially exercise or activity where we know that his sats drop some. But honestly, I am just ecstatic that he can use the conserver, as I had serious doubts that he would be able to trigger it.
All in all, it has been an amazing day. And we are so incredibly thankful.