Spinning

Maggie continues to manage to not bleed. That is the good news, and we are very grateful for it. Her g.i. doc thought that she'd wait until Monday to scope her to look to see how she's healing--if she doesn't bleed before then, which still remains a possibility, for sure.

However...

We feel like nothing ever gets better. Her low blood pressure has continued off and on overnight, they've adjusted her medicine up and down to match her need. She isn't spiking fevers, but her extremities were quite warm leading up to the initial drop in her pressures. So, when they started her blood pressure medicine, they also cultured her blood, urine, and lung secretions and added a another antibiotic in case a new infection was the cause of the low pressures. That seemed to immediately help as her extremities were no longer warm, and they were initially able to reduce her blood pressure medicine. But then she gets low pressures again and they increase the norepinepherine. She confused the docs in Dayton and she's doing the same here. In some ways, what she is doing is looking like sepsis and a new infection and that's their most likely explanation for this.

Maggie's lungs are showing some signs of heading in the wrong direction. Her x-rays have slowly gotten more hazy over the last 3 days and they are tweaking settings on the vent to help her shed CO2. Signs of ARDS. Slowly progressing ARDS is what we were fighting 2 weeks ago. Here we are again. What is it that allowed her ARDS to improve in the first place? Steroids. But steroids also likely caused her ulcers and bleeds, and quite possibly this new infection. Which caused her lungs to worsen. So what do we do? The infection is also making her puff up as the fluids in her blood vessels are seeping into her body tissue. However, her low blood pressure makes them reluctant to give her diuretics to help with the puffiness and to reduce the extra strain on her lungs. This is all just getting old--something new always interrupts progress, complicates treatments, confuses the doctors, makes Maggie's lungs a little bit worse. The fix for one symptom leads to the worsening of the next.

We've had enough of the drama. It is time to get better now.

Maggie had a period last night in which she was very awake. We gave her her worm rattle (a gift from her friend Jay many months ago). When Maggie was going through the toughest part of her leukemia treatment, the worm occupied her hands so she wouldn't grab any of her tubes or pull at her hair. It was always with her and the nurses knew Maggie, in part, by her clinging to the worm. So now, both of her hands are restrained so that she can't reach towards her mouth to yank out her ventilator tube. But she did take the worm from her right hand, transfer it to her left and held it in the air and shook it to make it rattle (with her eyes open). Then she transferred it to her right again and wiggled it. She did so while keeping her heart rate down (she was calm) and it got our attention, and we spent some time with her at bedside. Her eyes were glazed over in a narcotic-induced stupor, but it was the most life we've seen from her in 3 weeks. It was both a blessing and also, in a way, very hard to watch. We are almost always in Maggie's room, but we don't stimulate her, we don't talk out loud to her much because they work so hard to keep her sedated. We keep the room dark and quiet and sit in our corner. Maggie's grandmothers take our place so that we can eat meals a couple times a day, and that is very much appreciated. But the reality is that it is so difficult to see her like this and it feels like it will never, ever, ever end.

We have certainly been encouraged by some timely references to songs, scriptures, or from nice notes on the blog. Thank you for that. Although we feel like we're stuck in a hellish version of the movie Groundhog Day, we will continue to assume that prayer and perseverance are our ticket to Maggie's recovery. We still want to trust that God has a plan for Maggie that is bigger than just a few weeks of massive blog-following and Facebook prayers. We are praying that Maggie has the opportunity to have a future and to continue to touch people's lives well beyond this illness. Pray with us that she does.