September 10th: A Scary Night

Today is day 16 with Annie in the hospital. It's been a roller-coaster here with her. We don't know what happened in the night, but Justin was woken at 3:00am to our nurse, the charge nurse, the resident, and the hospitalist in the room. Apparently during the night our nurse noticed that Annie had gone very pale and had become non-responsive. Her temperature had dropped to 92 degrees!

They got heating blankets and a heat lamp on her as well as monitors to more closely watch her heart rate, respirations, and oxygen saturations. They also drew blood for labs to see what was going on. Annie's temperature slowly came up to 97 eventually, but she remained non-responsive until about 9:00 this morning.

Surprisingly, all of Annie's labs look pretty good. Her electrolytes are all fairly balanced, and her white blood count has even come down by 6,000 to 26,000! We suspect that the sulfasalzine was to blame for her increasing white count since it made a dramatic drop 24 hours after stopping that medication! So that was great news! But Annie's platelets are still elevated, as well as her CRP which is an inflammation marker in the blood. Annie's sodium was just slightly on the low end of normal, so they are now mixing her formula powder in pedialyte instead of plain water.

We don't know what happened last night to cause such problems, but now this morning she has become more alert and responsive. She is still under the heat lamp and heated blankets, and her heart rate is high, in the 130s, with elevated respirations in the 30s. Morning meds partially clogged her J-tube, but it's not a total blockage like yesterday. We're using more Coke to try to clear it.

Annie is tolerating quarter-strength formula fantastically through her g-tube at a full rate of 60cc/hr.  I think the plan today is to get her to 60% strength formula at a rate of 60cc/hr. That strength and rate is comparable to her at-home diet, so once she reaches that, she will have met her dietary and fluid intake goals!

We are very encouraged by Annie's WBC dropping so much in the last 24 hours. That is a huge relief, but we are not out of the woods yet. We are so grateful for everyone who continues to pray for Annie and our family.