The short good news is that Naomi’s labs were fantastic today! So we had good reason to celebrate. Her hemoglobin is up to 10.0. White blood cells 1.5 with ANC about 800. The best news is that her platelets hit triple digits at 109! Her kidneys are happyish but she knows needs to drink more…. it is a real challenge to drink enough some days.
ADDED INFO: We just got a call from the clinic that the follow up adenovirus tests were all negative. So she is clear of the virus. More good news!
Now I will tell a bit of how it really is for us here. So if you want only good news, you can stop reading now. 🙂 For the short version of that, Naomi said, “it sucks and the rules are ridiculous.”
I dressed Sinéad from shoes to jacket before even picking her up out of bed. It was the smoothest we ever got out of the room for clinic. We even made it through breakfast with no issues. As soon as we got on the bridge though, the good morning ended as the wind ripped away our good moods and we were all wishing for the warm desert. 40 degrees in May is ridiculous. I think it will be summer here before the temperature gets to 70…. if even then!
Sinéad was quite a handful in clinic making me turn all shades of red and pink as her behavior tore apart the playroom and craft supplies at the clinic. Whatever she had, she didn’t want. She was impossible to please. She tore everything in sight out and I could only follow her cleaning up as she went. And she was loud. To anyone in MACC day hospital today, yes, that was Sinéad screaming. My sincere apologies. Maybe you could just tell the team to send us home?
Ok, I am being silly now but we really are starting to want to go home. Everyone at MACC and CHW has been simply fantastic. The rules at RMH are very difficult to obey some days. It is nearly impossible for me to have all the kids in my view at ALL times. It is also impossible to have a toddler wear shoes every time we are out of the room. I have been reprimanded a few times for both those issues. It is disheartening to know the rules and truly try to obey them but have to break them for my own sanity at that moment only to then have a manager “catch” me and reprimand me for it. When in the playroom with Sinéad and Cait, it is easier to risk getting in trouble than to deal with a definite tantrum from Sinéad when she must leave the playroom for Naomi to use the bathroom. So I let Naomi go to our room alone. She needs to drink a lot of water which requires filling her canteen often. So sometimes I let her fill her canteen alone too.
I really don’t want to sound ungrateful. I can’t imagine life without access to a place like RMH. But yet the fact that I LIVE here without transportation and within these walls 24/7 with clinic only twice a week makes it impossible to follow the rules and I seem to get called on it fairly often. Many days it feels like my only choice is to hibernate in my room as often as possible. And to pray we can go home soon. Soonish?
When we returned to RMH after clinic we arranged to have Culver’s delivered. That gave us our ice cream fix and was a way to celebrate Naomi’s increasing blood counts. She also celebrated by doing some gymnastics. Just handstands and backbends and stretches but I can tell her energy levels are high and she feels good which makes all the struggles of being here worth it. We can endure anything to see her health improve.
One thought on “BMT +56 (Tuesday, day 72)”
Nice handstand Naomi!!!! I read your posts almost daily and I can’t imagine how challenging all of this would be and it is FREEZING here in the midwest these days which just adds to it all! I just have to believe that you’ll look back and say, “can you believe it! I can’t believe we lived like that for this long!” but you have, (amazingly so) and Naomi’s looking stronger and stronger (so it’s been worth it/successful in every way) so the fact that you’re telling us the way it is helps us to understand better, pray more and look fwd to the days ahead for you when your beautiful family will all be reunited!!!!!! Praying for warmer weather, less incidence of being caught in the moment!, 🙂 and grace for every minute of every day…and continued healing!!!!