Friday, September 4th
Avery had a better night Thursday night. She didn't get sick any and only woke briefly during vitals and to go to the bathroom. Her blood cultures came back positive from yesterday, so we started the day with an abrupt wake up at 6am to draw blood from her arm. They already had samples from her port, but they need a peripheral sample as well. This was obviously not taken well by Avery, so she started the day way too early and mad.
Her positive culture came back as some type of gram negative rod. This is typically a bacteria in the GI system. Due to her vomiting, stomach cramps, recent abdominal surgery(from her shunt placement), and the new culture growths ,they ordered an abdominal CT to rule out Typhlitis. She will require a 14 day course of IV antibiotics(Meropenem) to treat this. This bacteria is often resistant to the Cefapime she was previously on. We have not discussed if the entire course will be given inpatient or if we will administer some of it at home because we are still several days away from being in a place to go home.
Her platelets were 39 and hemoglobin was 6.5 this morning. She required both platelet and blood transfusions. She continued with fever on and off most of the day, but they stayed below 102.
The results of her CT were good, showing no signs of inflammation. The cultures from her CSF(from the shunt tap) also showed no growth as well. Her COVID test was also negative allowing everyone who enters her room to skip the face shields and gowns. Her ANC remains at zero.
She had a couple of short moments of playfulness and smiles, but overall she felt crummy and didn't want to be messed with today.
Please continue to pray for:
- No more fever
- No nausea/vomiting
- Rest
- More playfulness tomorrow
I'm reading and lifting up each prayer request. I just keep asking Why Lord? all the time knowing HE has the bigger picture. It's still hard! I'm grateful God is big enough for my questions. I sure would like some answers and I know you would as well. Dear Lord, hold Lori Beth's hand, walk with her, & when necessary carry her thru this trial. Give her the physical and mental strength to be Avery's strong advocate & voice. Give her other two little girls strength and understanding as Lori Beth is away. Be an ever present help to her husband. Impart wisdom to Lori Beth as she deals with the emotional impact upon the entire family & for Ave…
I am glad she is feeling a little better, but I can understand her anger with every needle, prod, and test. What has happened to her as a child would be huge for any adult! I know you ache each time she does, and that is where a Mother's heard can break; it is so hard to be helpless when she is in pain. YOU and SHON have really stepped up to the plate for Avery, and you have taken care of her when others might have just been too tired, defeated, depressed, or whatever. God knew you could handle this illness and that she was in the family who would love and support her! Prayers for you al…
Praying for our sweet girl. Love and prayers for Mom and Dad, too! You are doing a great job. Remember that God has got this.
We pray everyday for this sweet little angel & for you to Mommy!
Prayers that Avery and Mom will rest well and there will be no more fever or nausea the rest to the night so Avery will feel more like enjoying the things that make her smile tomorrow.