Day +275!……… And More Fluctuating Temps

Today, we will all be happy to be home together after the hard week it has been.  With Aaron due home at 1:30 today, we will start the weekend early and have a whole lot of resting on the agenda.

The seasonal change is hitting us hard.  Lauryn got sick last Thursday and vomited 4 times and was not herself for about 2 days.  By Saturday, we thought we were through it all, and the girls and I enjoyed an evening with friends at the pumpkin patch.  They got to do a hay ride, choose a pumpkin and see all kinds of animals.  We had so much fun.

Sunday morning, I woke with a cough and Naomi vomited.  Whether it was something she picked up from Lauryn or the pumpkin patch, we do not know.  I suspect my cough was a result of how dusty it was at the pumpkin patch.  But it started another week of low-grade fevers for Naomi (99.7-100.8).  For my other children, this temp would not concern me, especially considering she was eating fine, and seemed mostly normal, but the order are to go to ER over 101.  On occasion, her temp would go to like 101.3 or 101.5, but that was always when she was under a fleece blanket. Upon removing the blanket, it would go under the 101 where she is required to go to ER.  She had been moody this week, but I expect it had to do with me hounding her about drinking and checking temps constantly and the fear of going to the hospital.  She otherwise acted like herself much of the time but with a few less gymnastics.

On Thursday evening, her temp was over 101 and not coming down  With Aaron and I both exhausted, and Naomi crying like crazy because she did NOT want to go back to the hospital, he took her into the ER.  The hospital was fantastic at getting her right in to a private room and not exposing her to anyone else.  They questioned them at the door about possible exposure to ebola and whisked her into a private room while they contacted her physician.

Dr. Walsh was on call.  She ordered a CBC, verified Naomi’s results were good, ordered Tylenol, which was administered immediately, and then in the absence of any physical symptoms other than the fever, they sent Naomi home.

CBC results:
WBC 5.9
RBC 2.97
HCT 27.8
PLT 139
NEUT% 59.4
LYMPHS% 25.5
MONO% 14.3
EOS% 0.5
BASO% 0.3
This morning she is sleeping in while I try to keep little ones quiet for her to do that.  With today being 275 days since transplant and 1 year since her abdominal surgery, we are all relieved to be home.  One thing is for certain, Aplastic Anemia is very much a disease that affects one person’s body, but the minds of everyone in the family.  She was not the only one shedding tears as she left for the hospital.  Niamh was quite upset; Lauryn was certain she would be admitted; the boys were shocked and trying to figure out what the next day would look like if Naomi was admitted and Aaron had to go to work.  I still find myself questioning things I thought I knew and not knowing how to react.  I was fairly certain she would be admitted last night, yet was sent home immediately.  I was fairly certain they would order virus testing, and yet this morning nothing has been said about doing that although I have had email correspondence with both her local physician and transplant team.  The fevers send both Aaron and I into a state of fear because of all we have gone through with her.  Being after-transplant feels like walking through a forest with both patches of clear sky and dark cave-like tunnels, even overgrown weeds that need to be gone around.  There is never enough confidence to say that she is going to be alright, but yet a lot to celebrate.  AA has forced us to literally take life one day at a time and celebrate small victories.
Today we celebrate that her abdominal surgery was last year on this date and that her immune system is doing what it is supposed to be doing at 275 days after-transplant.

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