1/9/19 Why NO to public places

Tomorrow, Reese has been out of the hospital for 3 weeks!! This is a feat in and of itself. If kids are going to struggle in the home setting, it usually happens within the first week of discharge. She is continuing to get a little bit stronger everyday. So what could happen to send her back to the inpatient life we worked so hard to leave? A fever over 100.5, twice, an hour apart. Or any fever of 101. A fever is taken very seriously in a child who does not have a functioning immune system and a central line. She would be admitted, cultures drawn, and she would be able to leave again after it resolves and she is fever free for 48 hours.
Thankfully, Reese has never had an infection, bacterial or viral, since transplant (not counting reactivations, which cannot be avoided.) That is with a compromised (and at times, non existent) immune system for 8 months. This is a huge accomplishment and a great example of the exemplary nurses and extremely safe conditions in which Reese was living at UCSF. Now that she is in the outside world, we are doing our very best to keep this amazing streak going in a communal living situation. A second reason that Reese would visit the 6th floor once again is a flare. This would be her gvhd acting up as we taper her immunosuppressants. So far so good, things have been going perfectly. THANK YOU GOD, and our brilliant doctors. We know that gvhd saved her life, which makes dealing with the aftermath something we accept and are grateful for. But it’s still scary. In my doctor’s words, her gvhd was really, really, really, really severe.
So our plan is to continue to taper…. everything… and watch for any changes. In the meantime we spend our days keeping three sweet little girls busy and enjoying the outside world. CA really is the perfect place to recover because Reese can actually be outside in Jan, Feb, and Mar. In Portola Valley, Reese had a very special experience. If you know Reese, you know that she loves restaurants (just like her mommy.) She hadn’t eaten at a restaurant since last March and she was asking to go out to eat. Well, a family owned restaurant there opened an hour early so that Reese could dine at a RESTAURANT without the threat of crowds! We ate dinner outside, with heat lamps, away from people. It was very special to Reese and our family. It will still be a few more months until Reese can dine indoors because she needs t-cells over 200 that are functioning to be in that kind of unregulated environment. I think that even outdoor dining will still be few and far between until we hit that magic t-cell number (200!!), it’s just not worth it, but she sure did enjoy the experience. The last things that Reese will be able to do are go to public places. For example, movie theaters and Target. School is safer for Reese than Target. That’s right… sitting in a classroom with 17 other 4-year-olds would be safer than cruising the aisles of a supermarket with me. Why? Because the kids in her classroom have all of their immunizations. They are supposed to be “fever free” for 24 hours to be there. There are no regulations in a public place, I have no idea if the person ten feet away is immunized, has TB, or anything else about them. Think about the time your 3-year-old was sick from school so she ran to Target and Panera with you instead. Yep, exactly. I think about everything so differently now. Speaking of magic numbers… Reese’s lymphocyte sub panel is run every two weeks. This is where we learn about her t-cells. Her CD4s are at……. 190! Yep, that’s right. Headed in the right direction and *so close. In a “normal” transplant kid (nothing about transplant is normal, but in a standard case) t-cells of 200 means off isolation, back to school. This can happen around month 6-ish. This will not be the case for Reese, she is still on too many immunosuppressants. But it will lighten a lot of restrictions. Her CD8s are 1400… that’s a lot higher than they should be, ratio wise. This can be a red flag for gvhd (CD4s regulate CD8s, so having so many more CD8s essentially means there aren’t enough bosses around. That is not in medical terms!!) Reese is not showing any clinical signs of increased gvhd, so the doctors are feeling pretty good about things and we just keep swimming, keep praying, keep loving life together, and keep doing our darndest to keep her safe!

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