What day is it now??...Oh yes day # 12

Getting some humidity treatment after the extubation

Getting settled for the night (this lasted about 30 minutes)

The NoNo's

Tuesday was pretty exhausting for us. Last night Peyton's blood pressure was plummeting again. She was put on blood pressure medication to increase her pressure but it didn't seem to be working. We later found out the line was leaking. UGH...poor kid. To give you an idea she had been stable with the medication at level 3. This time it had been pushed level 9 and it still wasn't working. I couldn't imagine what would have happened if the leak had fixed it self and she was getting that large of a dose. The rest of the day was mostly a blur. Peyton had her usual plasmapheresis which went well again. She continued to produce urine and started to have diarrhea again. Around 10:30am the doctors determine she was ready for her ventilator to be removed. They prepared us that she would be very hoarse and probably cough for a while which she did. They still wanted to help support her lungs with pressured oxygen so we tried an oxygen mask first. Peyton wanted nothing to do with it and though she was still somewhat sedated, she still had the strength to pull the mask off. We then tried a nasal tube. This was better but it was still pretty irritating for Peyton. We ended up having to put her arms in "NoNo's" which is basically a splint for her arms to keep them from bending. This way she can't pull out her tubes. The rest of the night her blood pressure stayed pretty elevated, right around 130/80 ish which is fairly high for her age. She continued to breath at a rate of 80 per minute and was pretty congested. Today her coughing and breathing have gotten much better. Her labs are looking like they are starting to head in the right direction. Her platelets have risen to 87 and are continuing to raise by themselves...YAY! She is still having a lot of fluid retention so we did another round of dialysis today and got a whole liter of fluid out of her. She is looking much better and a little less swollen. She will also be doing another treatment of plasmapheresis which they are starting to set up as I type. Peyton has been playing with stickers, and attempting to blow bubbles for the past hour. Her spirits seem to be getting more positive though she is still pretty irritable. She is by no means close to being out of the woods. We are still worried about her kidney function and she did have another bloody stool today. We are also keeping a close eye on her lungs to make sure the fluid doesn't turn in to Pneumonia. We have hopes that the rest of today will bring good news.