By Paul Henry / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /

Blood you have one day. Get it right… (Both) or pay the price. ♬ Don’t you think we’re better together ♬ ♬ Oh ♬ ♬ I think we are ♬ Good morning, guys. Ollie and I came back to the house this morning. Mary’s at the hospital and we came back early because number one, I’m packing up a bunch of little Ollie doggies and I need to run to the church. I’m meeting up with some guys because we are decking out the church with Christmas lights for the Christmas season. We’re having this big tree lighting celebration where we’re lighting up the church and a big tree outside the church and so we’re getting ready for that. Hey Wendell, say hi to the camera. ♬ Christmas music ♬ (giggling) Well, first I turned on the camera, and it said no memory card… and then the entire day happened, so, good morning! It’s not morning, but it’s another day in the hospital, and I conquered it. (Peter) Yeah, you did. In a certain way. Look, we’re back together. Because… (sings) better together! So here’s what happened today. Do you want to sit with me? (Peter) I do. I want you to. (Peter) I miss you. I missed you! (Peter) Guys, I’ve been gone all day. I missed him. I left before she woke up and I’m glad I got here before you went to sleep. Yeah. (Peter) Well, that’s an awkward shot. Woah! (Peter) Sorry, Bones. It’s always good when that table rolls really easily. (Peter) Yep, those bedside tables. Let’s try not to knock over my clean misties. Okay. You can lay down, buddy. Do you want me to hold it? Are you on it? I am. Yeah, I think we should hold it, I don’t know. Can I burp? Yes, you may burp. (Peter burps) Ohhh! It was a juicy one! (laughter) That was my chipotle dinner. Okay, so here’s what happened guys. I say that I conquered the day, but… You did. I did. I did. But there’s like, fine print, maybe? Fine print. Okay. Asterisk. Caveat. So basically here’s what happened. My blood counts dropped again and… They’ve been dropping, so we started ceftazidime two days ago, the graded drug challenge, and then that that day they dropped. After like one or two doses. The next day, her, so this is her white blood counts Along with other counts as well. Next day and then today… and so the suspicion, while, so we had in our minds like this threshold we didn’t want it to go below, but… And by our minds we mean like the team of doctors. Yeah, like you remember day one in the hospital, we had all those or day two, like all of those teams came in and we talked through things, like this is what we talked about, like when do we need to come off the drug and today it was like, she’s like right on the borderline but looking at that trend down… So basically the decision that was made is and we feel like we feel good about this decision. Yeah. Considering the circumstances, so the decision is come off of ceftazidime and continue vancomycin. The ceftazidime… My Pseudomonas is um resistant to but like we always say, just because it’s resistant doesn’t mean we don’t try because with combinations with other drugs, it could potentially help. Yeah. So, because I’m resistant to it and my numbers are doing this, it’s not worth staying on, for now. So one of the things that we talked about for the last week that we’ve been here starting on day two and continuing, one of the things we’ve been talking about is would we consider medications to basically my understanding is stimulate my bone marrow to create more white blood cells. If my red blood cells were too low or my platelets were too low those would be a sort of simple fix because we could do a blood transfusion or a platelet transfusion. My platelets are low but in an… they’re okay for me, like they’re in a like safe enough range. Yeah, it’s not like you’re gonna bleed out to death from brushing your teeth. Right. But if if those do get too low we could do a platelet transfusion, but… You need me to take over? No, but my arm endurance apparently is pretty rough right now. Hey guys, Christmas sweater, check it out. Christmas! I mean, this isn’t, like I call this my winter sweater because it’s like… Yeah. Not fully like bright red or green. I don’t know. I love it. Did we get this at Primark? That’s just my excuse to wear it before Thanksgiving. We did get it at Primark. So basically, um, if there was a simple solution to the blood count issue we would do it. Yeah. So where we’re at, I can’t tell if this focused. Yeah, it keeps going in and out, but… it’s all good. Okay, so basically, where we’re at is we have considered, meaning we meaning my doctors and us, we have considered talking about some medications that do stimulate the bone marrow. It’s not a simple solution, and it’s not without side effects, and it’s not without risks, so at this point we’re not jumping to that as an answer, but if we come to that we will use that resource. Yeah. At this point. Tuck that in your toolbar…toolbelt… So at this point we are stopping ceftazidime and we are giving my blood a day to recover. Blood, you have one day. Get it right… (Both) Or pay the price! And… So I’m hoping that all day Sunday my blood is gonna be really bloody and I’m gonna think really… Bloody thoughts. Bloody thoughts, and my bone marrow is gonna be so happy! So that’s the plan and then hopefully if my blood counts are coming back up on Monday we could start a new antibiotic and we’ve talked about which one we’ll start and we’ll see what we end up going with. But at this point, that’s what we’re doing. I don’t understand why it goes out of focus. It’s out of focus again? So basically where we’re at is I’ve got three or four bacteria that I’m culturing right now, my normal Pseudomonas, the achromobacter, which is come and go in the last couple of years, but in the most recent ones it’s more consistent. The drug that treats achromobactor most effectively is bactrim, which is one that causes my white blood cell count to just plummet, so it’s really not an option at this point. Specifically at this point, meaning I’m too low to start. Achromobacter, and then just a staph that I’ve cultured and then the most recent one that we’ve discovered is MRSA, so that’s the one that the Vanco is treating and it’s kind of…I describe it as… I describe the treatment of these tricky bugs as playing darts with your eyes closed. Like eventually you’re gonna get it on the board Have you ever done that? No. Sounds very dangerous, and it is, and that’s actually a pretty good point. Kind of like pin the tail on the donkey. Except way less dangerous! True. But, like… we’ve got to try, right? Yeah. We’ve gotta try. Yeah, and that’s why we’re here. That’s right. And so basically the plan for now is tomorrow’s kind of a bloody, resty day. You know, like give Mary’s blood a day, continue the vanc treatment, which the vanc targets that MRSA. And… Which I guess we should clarify, so MRSA or “mersa” as is called… Yeah. It can be seen in a lot of areas of life. I’ve heard of it in like the gym setting. Yeah, it’s often, yeah. Like a skin infection. Yeah. I guess that’s probably the only other place I’ve heard of it, but in a Cystic Fibrosis world it’s a lung infection, in the same way that Pseudomonas is. It gets into our lungs because our lungs are susceptible to it because it’s got that stick, thicky mucus, because that’s what Cystic Fibrosis is all about. Let’s make too much mucus in the wrong places. So my lungs are the perfect place for that to stick and then at some point just like, okay, so like Pseudomonas, it’s a bacteria that’s like in the environment, like everybody’s exposed to it, but cystic fibrosis patients and probably other patient populations, I’m not sure who but some people are susceptible to it specifically cystic fibrosis patients in this case, and so that’s why it gets stuck in us and then over time it becomes resistant from trying to treat it. And that’s the same with the MRSA and then the other one is achromobacter, and the other one is a different strain of staph. So what MRSA is is it is a form of staph that is resistant. That’s the R in MRSA. So, it’s like Methicillin or something like that. To some… category of drugs so it’s basically a different species of something Mary was already culturing. Anyways, that’s just a bunch of shop talk about what’s going on Mary’s lungs right now. Yeah, so if you’re like a medical nerd and you’re interested in that sort of thing, there you go. If you’re like, I don’t know what any of that means. Well… Congratulations! Now you do. And also a lot of it’s a mystery to us as well, and it’s a continual like learning process. Actually, when the hematologists were here we, we’ve been learning how to like read my blood numbers and like try to grasp what they mean and that sort of thing, so they walked us through the different like, instead of just the white blood cell count, they walked us through like the absolute neutrophil count and where the threshold of that is, because I’m kind of on my own curve, they say like on your own growth curve, I’m on my own blood curve like I’ve never quite been normal since I have… A lot going on. Yeah, my spleen issue and all that so anyway. They explained it to us, so we’ve been trying to grasp the blood numbers and you know learning about my lungs and that sort of thing and um we’re still learning. We definitely… It’s a journey. It’s a journey. Did we tell them about the mold? The bleu cheese? Yeah, oh yeah, that was all in the vlog. Oh, okay. (giggles) All right guys, so that’s… That’s our day. Yeah, and that’s what’s going on, so we’re gonna hang out because we haven’t been together all day so (smooches) Thanks for hanging out with us tonight at the hospital and at the house today. Yeah. I hope you said hi to the house. Did you put up any more little tiny things in the room? I didn’t even think of it! I can show you, I have a couple little tiny things here that I would add to the room. Hold on. I’m attached to this feeding tube. I’ll show them later. Okay. All right guys, we will, as… As always. As always. (Both) We will see you tomorrow. Good night! Don’t worry. We will have the epic ending scene with the Ollie boy. Say good night to the people. Good night guys. ♬♬

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