Taking Steps Backwards

I was by far too exhausted to post an update last night, but Annie had a fairly uneventful day yesterday.  Her feedings continued at 20cc/hr (her normal rate is 85cc/hr) and she started having more regular wet diapers.  I was feeling incredibly encouraged until the nurse came to do Annie vitals around 4:00pm.  They got Annie's temperature at 101.1.  My immediate thought was a UTI from having the foley in.  So they straight cathed her for a urine culture.  I was encouraged that she had a decent amount of urine (still not as much as they would expect for being on IV fluids) but the urine is now a dark yellow instead of a dark brown.

The pediatrician and GI spoke with us last night.  The pediatrician is discouraged that Annie has not made any progress and the GI agreed that c-diff would normally have responded to the antibiotics by now.  So they ordered a more extensive blood test, and took a stool sample.

Annie had a terrible night last night.  The room was filled with doctors and nurses for about 3 hours during the night.  She started vomiting around 9:00pm, and was able to rest for a short while before the continual stream of doctors and nurses started around 1:00am.  Annie started throwing up again and had a huge diarrhea blow-out up to her shoulders.  A little bit later her vomit contained blood.  They stopped her feedings completely and connected her g-tube to a vent/drain bag, to help drain Annie's stomach and get excess air out.  We then saw more blood coming out of her g-tube.

After vomiting, Annie started a coughing fit that lasted over an hour.  The doctor said we need to allow her to cough to help get the junk out and hopefully protect her lungs.  They did some deep suctioning with a tube inserted down her throat through her nose, but Annie continued coughing.  By 3:30am her cough was very weak and unproductive.  But her blood pressure was still good, temperature normal, and her oxygen sats were still around 95.  They gave her zofran, but she continued coughing, gagging, and vomiting the rest of the morning until about 5:30am when she finally calmed down and fell asleep.  

After talking to the doctors this morning, they have decided to start Annie on a more gentle formula, Neokate 1+ at a rate of only 10cc/hr.  Today they are also changing Annie's IV fluids to complete TPN (total parenteral nutrition) to help get proteins and nutrients in her since she can't keep down formula.  Her IV is getting old, so she'll get a new regular IV this morning to start the TPN in.  If she continues to not keep formula in her tummy today, they'll start a PICC line tonight for her to continue receiving TPN. Her stool this morning showed lots of white blood cells again indicating lots of inflammation like we've known since September 7th..  Her urine culture from yesterday is negative so far, but they will continue to watch it. 

Annie started having seizures this morning, and just had a grand mal seizure, so we are continuing to watch her and monitor her oxygen sats and vitals while we wait to hear from the doctors.  She also received a dose of ativan.  Annie is continuing to have small moments when she is happy and smiling and giggling.  Even this is so unusual for her.  All I can think is that she is seeing all the angels that I know are watching over her.  Please continue to keep her in your prayers, and the doctors too, that they might be able to find some answers and get her the best treatment.

Molly and Lexie have been sorely missing us and craving attention, so we brought them to the hospital this morning to visit Annie and to have us all be together for a short while.  They seem to love the cable TV shows that we don't get at home.

Here's Annie smiling just a few minutes before her grand mal seizure.