September 11th: A Big Setback

Annie had a fairly uneventful night last night. At 3:00am I woke up and checked what her midnight vitals were. They showed her temperature was down to 96.4, yet no one had taken any measures to warm her up! So I piled blankets on her and turned the heat lamp on for a little while. Her temperature came up to 97.7 and this morning has recovered to 98.2. No one knows why her temperature is taking such low dips at night.

The good news today is that Annie's white blood count continues to drop! It fell by a full 9,000 since yesterday, now down to 17,500! We're so relieved to see that continue to drop.

Annie's heart rate is still elevated. She stays around the 80s at night but it starts increasing throughout the morning and afternoon each day, typically reaching the 130s.

Annie's hemoglobin is lower again today at 9.5, but they drew two blood cultures yesterday, requiring a total of 30cc of blood! So we suspect that just getting her well and not needing so much blood work will help a lot with that.

Annie is on feeds comparable to her at-home amounts, all going through the G-port of her GJ tube, so we hope that we can replace the GJ tube with her regular G-tube soon.

This morning when I got Annie in her chair, I noticed that her left arm, which has her PICC line, is rather swollen! I had the nurse stop the small amount of fluid Annie has been receiving through that line. Because of this issue, they removed the PICC line late this morning and did an ultrasound of her arm and upper chest.

The ultrasound showed that Annie has a blood clot that is blocking two vessels. In just a little while she will head down to radiology to get a CTA scan that will check for clots in her lungs and chest and any pulmonary embolisms which can be life-threatening. Annie will need a new IV of a rather large gauge for the CTA scan. She is running out of veins that haven't been traumatized, so the vascular access team spent quite a while trying to get an IV started.

Annie will need to be on an anticoagulant (blood thinner), possibly for the next 6-12 months. This is definitely not the news we wanted today just as she was starting to make improvements in other areas. However, this new development might be the reason Annie's heart rate has been so high. Blood clots can be pretty serious, so please continue to keep Annie in your prayers, that her clots might get resolved without any problems.

Swollen left arm with the blood clot vs. Normal right arm