I feel like I've had no time at all to write lately. I have emails upon emails to catch up on and people I want to stay in contact with that I just haven't had time or energy to do. This is why I love texting. Part of my email issue (and my blogging issue to be honest) is that I have to do that at the computer. If I'm at the computer that means I'm not in the bedroom with David. We have an ipad and a laptop but the lappy is tiny, it's great for travel but it's not great to type on, and the ipad is just not fantastic for making long posts because you can't touch type. That sounds like I'm making excuses, mostly I'm just venting.
Since the migraine I posted about last time Dave has been doing fairly well. It took a full week to recover from the dehydration and we think his stomach shrunk because he's not eating as much. That means his coumadin level was too high. WAY too high. His INR (blood thinness) is supposed to be around 2.2 ish and it was 4.4 YIKES! I even knew that was going to happen so I was giving him 1/3 of his dose for a couple of days while he wasn't eating much but it was still too much when I went back to his normal dose. I'm glad I didn't give him the full dose the whole time. I told his nurse I did that and she didn't say I should do it any differently so I guess it wasn't a big deal that I changed his med schedule. I think once you're on hospice they give you a lot of leeway as far as meds go. What's the worst thing that could happen? heh, that's kind of morbid but I get the impression that's the mentality. As long as people are comfortable they're not too worried about anything else.
Treatment went pretty well last time but we were supposed to get the results back from a genetics test and when we got there, all geared up for the answer, we found out they hadn't run the test yet because of a mix up with insurance. That was a little deflating. It hadn't been pre-authorized or something. I have confirmation now that it has and it's being run so by next appointment (next week) we should have an answer. It really doesn't matter if Dave has this bad gene but if he does it gives Owen a 50/50 chance of having it but if the Glioma is a random occurrence Owen doesn't have to ever be tested for it. We wanted to be sure before we subjected him to that someday. He'll have the chance to decide for himself if he wants to be tested after he's 18. One kind of comforting thing about it is that since David's sister has it (I don't remember if the others were tested) it means that one of their parents HAS to have it, it's not recessive. While that's scary too at least we know that you can live a good long life without ever getting cancer from it so it's not a death sentence. That's good for all the kids in the family to know when they make the decision to get tested.
One little oddity at the end of David's treatment last week was that when the nurse changed the dressing on his central line she noticed it was leaking a little. There is kind of a scab around where it goes into his chest and was just leaking fluid just a little bit. It could just be from the scab getting bonked around when the dressing was being changed but it's something they're keeping an eye on. Because he needs more to worry about. It's a few months old now and they said that's not really uncommon but if it starts to fail they'll have to remove it and I'm not sure what that would mean. Since it's torture to get an IV it might mean he's done with treatments. We'll cross that bridge if we come to it.
Last night he got another migraine and got a little nauseated. I dosed him up before it had a chance to progress into what it was last time. Crisis averted although he's basically been asleep for the last 12 hours. I'm so jealous. I'm getting about 1/3 as much sleep as he is! Friday Owen had the day off of school and I pretty much stayed in bed all day so maybe I caught up on a little. I was worried that maybe it was depression, you know where you don't even want to get out of bed? But mostly I think it's just exhaustion because normally I'm not quite that glued to the pillow.
Yesterday was a scary day. David's brother, Chris, has been having a lot of pain and was having trouble walking. His doctor was worried about a tumor pressing on his spine and they scheduled scans for tuesday (tomorrow). Over the course of a couple of days it got so bad he ended up in the ER. After a very long day of waiting it ended up being some bulging/ruptured discs and he's having surgery this morning to fix it. Thank goodness it's not what David has. They've been through so much they shouldn't have to go through this too. It brought it all back, everything we went through early in Dave's diagnosis, the not knowing and the fear and frustration of waiting for answers. Watching him be in excruciating pain and not being able to do anything about it no matter how many times you push the nurse call button. We obviously feel for what Chris is going through but I relate more to what Ricki is enduring. It's hard to put into words. I was so scared for them and it's such a relief that it's just his back acting up and it's something they can fix! We're praying for his quick recovery and I hope Ricki takes advantage of someone else taking care of him for a little while! Girl! Enjoy the help!
It's been a pretty good couple of weeks besides that stuff. My Dad and Holly came over to watch the Avengers as Dave and I hadn't seen it yet. It was good to see them and spend a little time together, plus it was an awesome movie even though I almost fell asleep. Not because it was boring, just because that's what I do during movies heh. Dave sometimes asks me, "Want to watch a movie so you can sleep?" Owen had a science project to build a model of an atom... which I helped him with... a lot. LOL (I hope his science teacher doesn't read this!) He probably didn't need me to help as much as I did but we made it out of beads and wire and he didn't know how to use my beading tools. I taught him some and he directed me some. Whatever... what parent doesn't help their kids with science projects? It was fun to work on it together. My mom came over yesterday and I painted her toe nails and she did my nails. Poor mom, I micromanaged because I'm used to doing my own nails but I just shut up and let her do it her way after a while. Someday I'll learn to give up a little control... maybe. It's been a crafty week I guess. I really want to get back into sewing, I have a few projects I need to finish including a baby quilt for my niece who is 9 months old! It may turn into a first birthday present. HA!
I really should write more often so I don't end up with a wall of text for every post. One last thought. I'm super frustrated this morning because hospice called to tell me that the (free) wheelchair transport we use isn't going to be able to take us next week because they have the van scheduled for something else. That means we'll have to pay for transport. The reason it's frustrating isn't because we have to pay it's because it's out of our comfort zone and consistency is kind of comforting right now at a time when most everything else changes so rapidly. It's the hospice company's own transport service but they only have one wheelchair van for people who can't transfer to a regular seat. They didn't have enough business so they just got a contract with a medicare/medicaid provider and now they're so busy and they do senior outings and such with the same van. I don't begrudge them needing to keep their business afloat but I DO have a right to get frustrated when things don't work out conveniently. So now I have to decide if we want to use an unknown quantity for transport or try to reschedule his appointment. The hospice social worker asked if she should call back this afternoon to find out what we want to do. I told her there's no way I'm making a decision about this today and to try me back in the morning. Yay for no decisions today! RAWR!