BMT Day 9

I keep trying to post an update but her status changes so quickly. The night was ok. Delirium and confusion was pretty intense. Ashtyn would yell, “I need my mom!” I responded, “Ash, I’m right here.” Looking straight at me with almost disgust she said, “You are not my mom!!!” Pointing at Ethan I asked who he was. “That’s Ethan and you are not our mom!” She was up and down in bed constantly, wanting to leave, not knowing where she was or really even who she was. The best thing was to allow her to move however she wanted. When she wanted to get out of bed, she would sit at the edge of the bed, wrap her arms around my neck and I would stand her up with a nurse and/or nurses assistant to help steady her. Ash would push me wanting to walk away but I kept her close to the bed and let her feet move. “Oh look Ash, there’s your bed. Do you want to lay down?” She would get back in bed to then again sit up and want to get out of bed again. There wasn’t anything else we could do for her except support and try to orient her the best we could. By 2:00 a.m. she fell asleep for about 1 1/2 hours which was awesome. Since 5:30 a.m. she has been opposite of agitated and quite comatose. She will wake up from time to time and knows who I am. A CT scan was done to check for brain swelling. It came back normal which is a great thing. A lumbar puncture will be done soon to check for viruses. An MRI is scheduled and a central line might be started for continuous renal replacement therapy (dialysis). Her kidneys continue to show that they are injured and her blood cultures are still positive for bacteria. Her breathing is very labored so she may be getting a breathing tube. Her blood pressures are now low so a medication called norepinephrine may be started. This girl has so much going on. Bottom line, this is Ashtyn’s 3rd bone marrow transplant. Though these complications are severe, the BMT team is not entirely caught off guard by what they see. It was always anticipated that problems would arise due to how complex a transplant is and how her organs have already been through so much with having had two previous transplants. Her body always seems to take the most difficult path, stumping medical professionals along the way, giving them a run for their money, and then she always amazes everyone by pulling through unscathed. That’s our girl. She is in desperate need of prayers. Pray for 1. her Spirit that it will continue to have that strong fight within. 2. The healthcare team will be guided, helped, and blessed along the way. 3. Her body will recover allowing her to be the nurse, wife, and mom she wants to be.