1 Year + 161
1 year +161
Tuesday we spent almost two hours with rheumatology. Tate was having a rough day with chills and nausea, fatigue and pain. She slept through most all of it which is kind of a blessing. Talking through all the challenges and lack of direction/understanding about yourself isn’t easy. But most important to where we currently sit, is a team that won’t give up and genuinely cares. We are forever grateful for Dr. Moore. There is still considerable lack of understanding as to what Tates kidneys are doing and where her disease is headed. There’s always options on the table for testing and still more meds to try. We’ll give the current immunosuppressants more time to work and go from there.
A looming challenge is virus/disease protection. Tate has zero vaccinations-all wiped out by transplant. Immunosuppression makes her susceptible to all kinds of things and less able to fight back, yet also makes live vaccines not an option. Her level of inflammation also puts all non -live vaccines on hold. No matter your view on vaccines, an immunocompromised kid with the immune system of a newborn that is currently on fire, attacking itself, makes heading into cold/flu season a reason to pause. Something more to lay at Gods feet.
Care conference was called for today with I believe, 6 of Tates specialists (yes, she has many more.) Just the docs. So much of Tate’s issues come with overlap, so getting everyone brainstorming together is necessary and a blessing! We aren’t anticipating a cure to come out of this, but rather a direction and plan. Planning these is a big deal and typically a sign that a reboot is needed with direction.
Tate is struggling. Pain is bad, and fatigue has been intensified this week. Tate struggles to stay awake yet isn’t rested from any sleep. Pain makes that difficult. Tate amazes me with her ability to put on a smile and power through with the desire to do “normal” activities. But underneath, there’s physical distress and sadness. We are so thankful for the positives that came with transplant, but so disappointed with the big picture of her current health. Finding the little joys and planning bigger things to work towards keep us going.