April 8, 2024
2 Years + post BMT
Tate ended getting this virus just like the rest of us. There was lots of discussion last week with her team on how to best protect her. Due to some past cardiac issues, we decided against the paxlovid and to just hope the IVIG would be enough. Tate is definitely not feeling well, but is overall doing fine. I seem to get all the weird symptoms that go along with this. I appreciated Tates nurses last week when I showed up to her infusion with swollen, painful eyes. They set me up with my own warm blanket, pillow and compresses for my eyes. Recovery is S.L.O.W. with this one. We are adding back in regular therapies and appointments this week.
Monday we meet with palliative care. We aren’t quite sure what to do with the emotions that come with this one yet or even what it will look like for us.
The last few weeks we’ve been struggling with dental of all things. Due to Tate’s disease processes, past treatments, medications and nutritional challenges, she struggles with her teeth. Due to this and her medical complexity, she’s seen at the children’s hospital dental clinic and has had dental care done under sedation at Children’s Hospital. We’ve been battling some issues since June that have now progressed to causing bigger issues. Tate needs a bunch of relatively simple things fixed, best done for her, under sedation and again, due to her specific needs, this has to be done in a hospital not under sedation in a dental office. I was getting absolutely nowhere and not being heard, being pushed out for months all while Tate is experiencing tooth pain in known cavities. Frustrating! And we had SO many amazing doctors and childlife specialists who know her advocating for her! I still do not understand where or why the breakdown took place.
But….this really is to highlight the positive not the negative….because on Friday, everything came together. Through a little detective work and a really kind ENT scheduler who was willing to just pause and listen, I was directed to a dentist who does sedated dentistry at both Children’s hospitals, will see her Monday and likely be able to fix all her issues under sedation in just a couple weeks at Children’s with all the people who know Tate. This was after lots of days of lots of dead ends of offices who felt Tate was too much to take on for their office. I’m not sure why this had to be such a stressor or so difficult, but it seems as if it will work out and for that, I’m so grateful. Sometimes it just takes either one to stand in the way or one to want to help. It takes so much less energy to choose to help. Be a helper. You can absolutely change someone else’s path by just taking the time to listen.