Post BMT Day + 134
Post BMT +134
Day 9
Today was sufficiently draining and tough. Tate spiked a fever this morning along with increased tremors and some pretty significant and upsetting neurological symptoms. She also had full body pain and a light and movement sensitive migraine. Increased GI pain as well. She was started on a second antibiotic right away and basically given meds to treat symptoms that also put her to sleep. I was so so grateful for that! Lots of back and forth on another lumbar puncture, getting a brain mri, and whether or not PICC placement would still happen tomorrow. After a better afternoon and evening, a brain MRI paired with PICC placement tomorrow was decided on. The Tylenol has kept the fever from spiking again and neurological symptoms improved. Scary and sad and hard to see today. The ongoing neurological challenges that Tate faces are by far the most challenging to witness and not feel absolute despair over. Today was hard. Tate’s exhausted. I’m exhausted. Tim is exhausted. Keira came to be the amazing support and light she is. She brings joy and silliness and a sense of normalcy no matter what is happening and is often the only one that can bring a smile to Tate. My heart is already breaking thinking of her leaving for school in 4 short weeks. What an unexpected bonus blessing it has been to have her home!
Tate had two IV’s placed in one hand during the night along with another culture. This should be the last night she has to get through with the IV’s and extra culture/lab draws and then will have a PICC line tomorrow afternoon. The peripheral cultures remain negative, which is good. But we aren’t sure where the new fevers are coming from. We are holding j tube feeds once again to give her gut a rest.
So incredibly thankful we had a nurse today that knows Tate so well to help me convey all that was out of sorts. Ash is a Daisy nursing award winner for this year and there is no one more deserving. She exudes love and light and positivity and is one of our greatest blessings here. She has a special relationship with Tate, is an amazing advocate and also a support to me. She’s not on FB, but we you Ash!