Sunday, October 11th
Avery was able to sleep the first couple of hours of the night before waking in pain. She continued to run a fever throughout the night. Her platelets dropped to 39, so she received a transfusion around 4am. Shortly after that, she vomited. She vomited twice more by 9am. Despite the pain meds, she was still in a great deal of pain and not wanting to get out of bed even though she was asking to go to the bathroom. We finally asked for a dose of Ativan for the nausea, and she received another dose of Tylenol for fever.
After that, it was like a switch had flipped. She was sitting up wanting to play for the first time in a few days. Most of the cramping was gone, although she still had some tenderness in the lower left quadrant of her abdomen. The rest of the day was OK. When she was running a fever, she felt terrible, but when her fever broke, she felt pretty decent. She was able to play with slime and Legos a little bit.
Her hemoglobin had dropped but was within parameters. Her sodium had dropped to 134/135. Her ANC was down to zero.
Due to losing so much fluid from vomiting and her sodium levels, they changed her back to the hydration plan we were following in Special Care. She is receiving half feeds(28mL/hr) with no oral sodium supplements, and 55mL of normal saline. Since the x-ray from Friday ruled out any major issues causing her abdominal pain, they are still investigating due to the pain and the fevers. They started her on the antibiotic Flagyl to treat for possible Typhlitis. They are also going to check for specific identifiers in her next set of labs to rule out pancreatitis.
Due to the fevers and the heat she was radiating, her port dressing had become not occlusive. They tried changing the dressing, but Avery wasn't having any part in that. They ended up re-accessing her which she surprisingly did well with. Surprisingly, stickers/dressing cause Avery more issues and anxiety than you would think. For some reason, they never stick well to her. She is also extremely picky about the size and feel. If it goes into her armpit(which most do) that is a huge trigger for her. She has come along way in the past year around this, but it is still an issue more often than we would like.
As always, we had some good parts of the day along with some bad. We were thankful that there was more good than the previous day though.
Please continue to pray for:
- No positive cultures
- Relief from stomach pain
- No more fevers
- Rest
- Recovery
I am sorry she has had these bad parts of her day and grateful for the better parts! I am asking for all your list had and continued good days for this sweet angel. I hope that she is better soon and you both can come home!
Continued prayers for improvement all around. Glad she IS a superhero and can smile thru it all! She is my hero for sure!