Back and forth

Anna is back in the hospital with another fever.  We had quite a bit of back and forth between the hospital and home this week, but now she is in-patient until Monday at the earliest.

Anna had her cardiology appointment on Monday afternoon and then her clinic appointment on Tuesday.  By Wednesday morning she was feeling better after having fought through whatever cold virus she had, but was continuing to look more and more pale.  She went to school on Wednesday and had a good, productive morning.

Thursday morning the home-health nurse was scheduled to come for a visit before school so that Anna's labs could be processed as early as possible.  Because I was anticipating a trip to the hospital for transfusions, and because Anna was certainly extra tired, she stayed home from school.

This week we learned about some of the frustrating parts of "the system".  Even though Anna's blood was drawn at 8:30 and the nurse left our house by 9, her lab results were not available until 2 p.m.  Her hemoglobin was low enough to neccessitate a transfusion yet on Thursday, even though day treatment does not accept transfusion patients after 2 (the transfusion wouldn't be complete before day treatment closes at 6).  In this situation, a patient is admitted to the hospital for a temporary stay; they receive their transfusion, and then go home.  If everything goes smoothly, they can still go home that night.

But things don't often go smoothly, or quickly.  Not only did Anna need a transfusion, but her g-tube site was red and irritated again.  It had been a little red since it was switched to a button a few weeks back and we were trying to be diligent about cleaning it.  However, it is very difficult to clean effectively, especially when Anna only does sponge baths immediately after treatment due to the extra tubes coming out of her chest.

Thursday night the plan was for Anna to receive her blood transfusion, stay overnight with some IV antibiotics, have a platelet transfusion in the early morning, and then, assuming her g-tube site looked okay, go home.

Well, the platelet transfusion didn't happen when it was supposed to happen and the g-tube site looked more red.  So Anna was sent home with some oral antibiotics in the afternoon with the understanding that if she spiked a fever, she would be right back.

Side note, prior to 2014, Anna had only had two courses of antibiotics ever, one for Lyme Disease and one for a mysterious fever and infection when she was almost 3.  I am not exactly sure how many times she has received antibiotics this year, probably dozens, not including the standard weekend antibiotic every chemo patient gets.

Back to Friday, we had a few hours at home, were able to welcome Kate back from school and Ethan back from a friend's house before her fever came on at about 5.  So we repacked the bags and headed in again.

Here began round two of experiencing frustration with the system.  Even though we were in the room by 5:45, Anna did not get started on her antibiotics or receive her stress dose of steroids until almost 7.  It may not seem like a long time for a normally healthy kid, but for a neutropenic cancer patient, fevers can escalate very quickly.  The nurses on P4 were paging everyone possible to get the meds to the floor, but by 6 p.m. on a Friday, a lot of staff transitions are taking place making immediate care more challenging.

But, Anna was doing well enough by 8:30 to make me feel comfortable to go home and get a night's rest before making it back by 7:30 this morning.

Anna is doing much better today.  She has been fever free since last night, is feeling and acting much more like herself, and her g-tube site looks less "angry" than last night.  However, her white cells are still practically non-existent.  She will need to stay in the hospital until she is fever free for more than 24 hours, her white cells are convincingly on the rise, her blood cultures come back negative for 48 hours, and her g-tube site continues to look better ... most likely Monday at the earliest.

Depending on how long it takes for her white cells to recover, she may end up needing another transfusion as well.

Matt has done well taking over as Mr. Mom the last few days; we will be forever grateful to our friends who have assisted with childcare with Kate and Ethan (often on a moment's notice); and we simply cannot wait for the final round of Anna's chemo to be behind her.  Unless Anna's final treatment is delayed, she should be out of the chemotherapy woods by the second week in November.

I came across a term recently that I think applies to me now - momcologist.  I like being the mom better, but I'll learn what I need to learn to help Anna get through as safely as possible.

Please continue to pray for us as we work through this weekend and the early part of next week.