Dave had another sleepy day for the most part. It's my birthday and I got to get out and run some errands with Rose while my Nana hung out with Dave (read: watched him sleep) When I got home he was up for a little while and ate some lunch (yay!) and chit chatted for a little bit. I got him all settled and let him rest up for the party.
I got some flowers for my birthday from a friend and from Dave's aunt, it really brightens up the place. Now I just have to keep them away from Bob, the cat. He LOVES flowers... in his mouth. HA! Naughty kitty.
Tonight my Dad stopped by for a few minutes to wish me a happy birthday and then my Mom and Nana came over. Mom took Owen to pick out thai food and she brought angel food cake, because a birthday isn't a birthday without cake! I woke Dave up and gave him some Dr Pepper and he had some dinner and cake with us. Probably more cake than dinner but a man has to have priorities. After everyone left we settled in for the evening and cuddled up to watch the Rose Bowl that's been sitting on the DVR for the last month. Normally football isn't for cuddling but we made an exception. I can't believe he stayed awake so long! What a wonderful birthday! Having him here with us and being able to spend such quality time together is everything I could have wished for.
I called the dr again and the nurse told me he was going to call at the end of the day but it's 11:00pm and he hasn't called. I'm guessing he's not going to today. Oh well. We're trying not to be frustrated but I'll be calling first thing in the morning... again... to see if we can get a hold of him. This is the problem with having a busy doctor, he's good at what he does from all that we've heard but he's ridiculously hard to get on the phone. It's a little disheartening. On the bright side we got notification from insurance saying that the IV chemo is pre-approved so theoretically we CAN do it... assuming we can get Dave out of the house and that the dr actually contacts us.
Owen has an appointment to get his braces adjusted tomorrow after school. Thankfully Nana is going to take him for me so I don't have to leave David. I'm glad he's maintaining some normalcy. Ooh he got his report card today, all A's except for one B. Awesome job! Especially considering everything that's going on at home. He's a trooper and we love him! 2 weeks until his 13th birthday. A teenager! ACK! ;)
I'm so thankful for the day we've had even though we didn't get every bit of info we wanted. I'm just thankful that we had the opportunity to spend quality time as a family. The outpouring of love from friends and family really means a lot to both of us. It helps David to know that while we're caring for him others are caring for us. Thanks everyone for the wonderful birthday wishes! <3
Tuesday, January 31, 2012
Monday, January 30, 2012
Someone's Having A Case of the Mondays
Today was a sleepy day. Not sure why but Dave was extraordinarily sleepy today and just couldn't quite wake up. His pain is pretty much under control with the morphine and the occasional advil and the nurse said he could cut back on the anti-seizure meds so that will help him not be quite so tired as well. I hope that works for him.
Right now we're trying to decide if he should stay on hospice or move to home health and if he should do chemo still (have calls in to the dr but he hasn't called back which is super frustrating) and if he can take the coumadin again and and and... Just a huge list of things we're unsure about right now. On top of that all the other things we have to get done or want to get done.
Tomorrow is my birthday, Yay! For my birthday I think I want some answers, I don't even mind if they aren't gift wrapped. ;)
I'm not sure if we'll be able to transport Dave to/from dr's visits and chemo treatments regardless of what the dr wants to do because even being jostled around today by the bath aide wore him out so much that he pretty much slept the whole rest of the day. I wish there was something I could do to give him more energy. If I knew I would certainly do it. So I'm letting him sleep and trying to take care of other things and stay busy and productive. I think the most productive thing I could have done is to take a nap though.
Right now we're trying to decide if he should stay on hospice or move to home health and if he should do chemo still (have calls in to the dr but he hasn't called back which is super frustrating) and if he can take the coumadin again and and and... Just a huge list of things we're unsure about right now. On top of that all the other things we have to get done or want to get done.
Tomorrow is my birthday, Yay! For my birthday I think I want some answers, I don't even mind if they aren't gift wrapped. ;)
I'm not sure if we'll be able to transport Dave to/from dr's visits and chemo treatments regardless of what the dr wants to do because even being jostled around today by the bath aide wore him out so much that he pretty much slept the whole rest of the day. I wish there was something I could do to give him more energy. If I knew I would certainly do it. So I'm letting him sleep and trying to take care of other things and stay busy and productive. I think the most productive thing I could have done is to take a nap though.
Sunday, January 29, 2012
Weekend Update
David has been progressing all weekend. He's very weak as you can imagine but he's starting to eat normal food (i.e. not broth and applesauce) and he's taking some of his meds by mouth again plus asking for meds that they had previously cut him off from. I keep checking with the nurses to find out if I can give him things like his coumadin and they're saying things like "there's no reason to give him that at this point" That's somewhat upsetting because if feels like they're saying they don't want him to prolong his life. That may not actually be what they're saying but I'm thinking that I'm going to be calling the dr first thing in the morning to find out what exactly we *should* be doing rather than what the nurses are saying.
Yesterday I got a massage, the first of 3, that my mom and Rose & Tim got me for my birthday (it's tuesday!) The lady comes to the house and everything! What a nice treat. Thanks! Yesterday we had family visit from out of town which was nice even though Dave was too tired to spend time with people and Tim and Rose held down the fort while I got my massage, then my brother Jaeger and his fiance Sara came over with little baby Gabriella. Our new niece! YAY! While Gabby was sleeping and Dave was awake we laid the baby on his chest to take a little nap. He needed his baby fix! It was really nice to be able to spend time alone with them and hang out. Jaeger played video games with Owen which O really liked since he's not all that keen on babies.
Today was the first quiet day we've had in a long time. We're on something of a routine and it was nice to just hang out and nap and talk and watch silly TV and relax. Seriously, yay for naps! We really love and appreciate the visits but we're also appreciating our quiet time as well.
It's a lot of work making sure we stay on schedule and I can't say I'm perfect but it's manageable. We're just trying to stay ahead of the pain and still keep him as healthy as possible. We're hoping he'll be up in the wheel chair soon but for now I'm just sitting him up in bed for short periods to try to adjust to being upright again.
Yesterday I got a massage, the first of 3, that my mom and Rose & Tim got me for my birthday (it's tuesday!) The lady comes to the house and everything! What a nice treat. Thanks! Yesterday we had family visit from out of town which was nice even though Dave was too tired to spend time with people and Tim and Rose held down the fort while I got my massage, then my brother Jaeger and his fiance Sara came over with little baby Gabriella. Our new niece! YAY! While Gabby was sleeping and Dave was awake we laid the baby on his chest to take a little nap. He needed his baby fix! It was really nice to be able to spend time alone with them and hang out. Jaeger played video games with Owen which O really liked since he's not all that keen on babies.
Today was the first quiet day we've had in a long time. We're on something of a routine and it was nice to just hang out and nap and talk and watch silly TV and relax. Seriously, yay for naps! We really love and appreciate the visits but we're also appreciating our quiet time as well.
It's a lot of work making sure we stay on schedule and I can't say I'm perfect but it's manageable. We're just trying to stay ahead of the pain and still keep him as healthy as possible. We're hoping he'll be up in the wheel chair soon but for now I'm just sitting him up in bed for short periods to try to adjust to being upright again.
Friday, January 27, 2012
Finding Balance
Today has been an adventure in patience. David slept pretty much all day but every time he was awake he was a little more communicative. The lucid moments were only a few minutes at a time but he is a totally different man than yesterday! Or rather he's just a very tired version of normal self. Outrageous change! In all honesty we didn't expect him to make it 24 hours and now he's doing much better.
I spent the day talking with our hospice nurses, my pharmacist uncle, tim's nurse sister. It's amazing that every person I talk to gives me a slightly different answer but they aren't contradictory so I feel like I'm getting as much information as I can possibly get. Especially since the hospice nurses have told me that it's going to take some trial and error (in the framework they gave me) to figure out what dose of what will work out best for him. The goal being keeping him comfortable and able to be aware of what's going on around him as much as possible.
I am having a bit of a struggle because I had to make a call to move to hospice because of his pain and inability to communicate yesterday. We were told they didn't think he would make it through the day and yet here he is. I know his condition could change again just as rapidly as it has been changing but for now he's ok... so now we're left wondering if that took chemo off the table. I don't think I really had any choice but I don't want it to screw up his chances of living as long as he can as comfortably as he can. It's probably not a big of a deal as I've made it out to be in my head, I just feel bad for having to make that decision without him.
He doesn't really remember anything about yesterday. That's likely from the Ativan that he was given for the seizures (he hasn't had one since 2:30 on thursday) so I had to explain it all to him. He was disappointed about being on hospice but when I apologized he said, "I trust you". No pressure, right? I just hope I made the right choice. If I have to fight for him to stay on chemo while on hospice I will. i don't know if I will win that fight but I'll fight it as long as he wants me to.
We've had people bringing dinners the last few nights, I can't tell you how appreciated that is. It's one less thing to worry about. We can use all the "less worry" we can get!
I spent the day talking with our hospice nurses, my pharmacist uncle, tim's nurse sister. It's amazing that every person I talk to gives me a slightly different answer but they aren't contradictory so I feel like I'm getting as much information as I can possibly get. Especially since the hospice nurses have told me that it's going to take some trial and error (in the framework they gave me) to figure out what dose of what will work out best for him. The goal being keeping him comfortable and able to be aware of what's going on around him as much as possible.
I am having a bit of a struggle because I had to make a call to move to hospice because of his pain and inability to communicate yesterday. We were told they didn't think he would make it through the day and yet here he is. I know his condition could change again just as rapidly as it has been changing but for now he's ok... so now we're left wondering if that took chemo off the table. I don't think I really had any choice but I don't want it to screw up his chances of living as long as he can as comfortably as he can. It's probably not a big of a deal as I've made it out to be in my head, I just feel bad for having to make that decision without him.
He doesn't really remember anything about yesterday. That's likely from the Ativan that he was given for the seizures (he hasn't had one since 2:30 on thursday) so I had to explain it all to him. He was disappointed about being on hospice but when I apologized he said, "I trust you". No pressure, right? I just hope I made the right choice. If I have to fight for him to stay on chemo while on hospice I will. i don't know if I will win that fight but I'll fight it as long as he wants me to.
We've had people bringing dinners the last few nights, I can't tell you how appreciated that is. It's one less thing to worry about. We can use all the "less worry" we can get!
The Wonders of Morphine
Yesterday morning at 6 I woke Dave up to move him around and give him his meds, we fell back to sleep and Owen said goodbye at 7:30 when he left for school and Dave was still sleeping. I drifted back to sleep and at 7:45 I woke up to Dave being in obvious pain but I couldn't get him to respond to me. He was moving around and making noise but was unable to talk so I made a couple of calls and got Rose to come over and the Home Health nurse on her way. Tim's mom is also a nurse and called me while I was waiting which really really helped me. She told me I needed to bypass home health and go straight to hospice so when the nurse got here that's what we did and the hospice nurse and social worker came out within a couple hours.
Since all the meds we got were pill form and David was in no condition to swallow anything the hospice nurse ordered liquid pain meds for us. A box of stuff was delivered and starting at 1pm he's been on Morphine for pain and Ativan for seizures, he's also still on steroids to keep any inflammation down. To my count he had at least 5 small, scary but nonviolent seizures but those stopped after giving him a good dose of Ativan.
It was very obvious all day that he could hear us even if he couldn't respond so we have just been talking to him. The nurse in the morning said he probably was pretty close to the end but as the day wore on into night he started being able to respond a little bit. Mostly just ya and no and slight head nods but it was encouraging.
Rose spent the night (worst reason for a slumber party imo) and we set alarms so we could be sure to stay on top of the dosing and moving him around to avoid bedsores. He slept so well all night! We moved the "hospital bed" up next to my side of the bed so I could have my hand on him all night. Every time we had to wake him up he seemed a little more with it. Early on when I would tell him I was giving him morphine he would bat me away and push his lips together but by this morning when I gave him the morphine he would help me and he even asked for it at some point. I think we may have finally gotten ahead of the pain.
Around 4 am he even asked for a drink of water, big difference from the man that woke me up yesterday because he was making sounds of pain. I was nervous because I didn't want him to choke on the water but I moved the bed up so he was mostly sitting and I can't very well deny a man of water!
I'm not really sure what happened. I talked to his neurologist's PA and she said that if it was the tumor he wouldn't have use of his arms which he does. I wondered if he had a stroke or something but he didn't have any classic stroke symptoms except that he couldn't talk. After everything we went through yesterday trying to find the right dose of the meds we have available to us I'm wondering if he was just in so much pain that he went into shock of some sort that triggered the seizures and made everything go down hill.
At this point he's on a good dose (not a huge dose but high for him) of morphine, .5ml every 1-2 hours, and he's super super groggy but he is talking a little more and said, "I love you" which is more words than he said at once coherently all day yesterday. We might have the dose a little high and now that we have the pain under control maybe we can lower that a little but we'll wait for the nurse to come before we adjust that, for right now I'm just thrilled that he isn't in any pain and that he's sleeping well and breathing well.
We had so many people here yesterday and Rose has been here basically since she woke up yesterday. I'm so grateful we have such amazing friends and family.
I'm hoping as the day progresses so will David. We're looking for that sweet spot between comfortable and lucid.
Since all the meds we got were pill form and David was in no condition to swallow anything the hospice nurse ordered liquid pain meds for us. A box of stuff was delivered and starting at 1pm he's been on Morphine for pain and Ativan for seizures, he's also still on steroids to keep any inflammation down. To my count he had at least 5 small, scary but nonviolent seizures but those stopped after giving him a good dose of Ativan.
It was very obvious all day that he could hear us even if he couldn't respond so we have just been talking to him. The nurse in the morning said he probably was pretty close to the end but as the day wore on into night he started being able to respond a little bit. Mostly just ya and no and slight head nods but it was encouraging.
Rose spent the night (worst reason for a slumber party imo) and we set alarms so we could be sure to stay on top of the dosing and moving him around to avoid bedsores. He slept so well all night! We moved the "hospital bed" up next to my side of the bed so I could have my hand on him all night. Every time we had to wake him up he seemed a little more with it. Early on when I would tell him I was giving him morphine he would bat me away and push his lips together but by this morning when I gave him the morphine he would help me and he even asked for it at some point. I think we may have finally gotten ahead of the pain.
Around 4 am he even asked for a drink of water, big difference from the man that woke me up yesterday because he was making sounds of pain. I was nervous because I didn't want him to choke on the water but I moved the bed up so he was mostly sitting and I can't very well deny a man of water!
I'm not really sure what happened. I talked to his neurologist's PA and she said that if it was the tumor he wouldn't have use of his arms which he does. I wondered if he had a stroke or something but he didn't have any classic stroke symptoms except that he couldn't talk. After everything we went through yesterday trying to find the right dose of the meds we have available to us I'm wondering if he was just in so much pain that he went into shock of some sort that triggered the seizures and made everything go down hill.
At this point he's on a good dose (not a huge dose but high for him) of morphine, .5ml every 1-2 hours, and he's super super groggy but he is talking a little more and said, "I love you" which is more words than he said at once coherently all day yesterday. We might have the dose a little high and now that we have the pain under control maybe we can lower that a little but we'll wait for the nurse to come before we adjust that, for right now I'm just thrilled that he isn't in any pain and that he's sleeping well and breathing well.
We had so many people here yesterday and Rose has been here basically since she woke up yesterday. I'm so grateful we have such amazing friends and family.
I'm hoping as the day progresses so will David. We're looking for that sweet spot between comfortable and lucid.
Wednesday, January 25, 2012
Home Sweet Home
Today was not without speed bumps but the bottom line is HE'S HOME! YAY!
As soon as he got home the cats all came in the bedroom to investigate and Freckles laid on the bed all stretched out with him and kept him company for hours. It's good to be home.
Of course because of the strange schedule David somehow got a bit dehydrated and his neck is hurting from being jostled around so much and he ended up with a migraine. Welcome home, here's a migraine! I got him pretty drugged up (safely drugged... if there is such a thing) and he's sleeping now. YAY FOR SLEEP!
Tomorrow the nurse from home health comes to check in on things and offer her expertise. I know we've already come so far but I feel like this journey has just begun and I've got a list in my head a mile long of things I know I need to do and learn but I just can't get them out in any kind of orderly fashion. Handy.
One kind of cool thing I realized today, we've had a large whiteboard hanging on the wall in our bedroom for years. I know, totally classy decor. It's an excellent way to keep track of med schedules and things like that, kind of like they have in the hospital. I never knew it would serve a functional purpose other than drawing pictures and jotting down random shopping list items. I'm more organized in some regards than I ever thought I'd be and in other regards... yeah... not so much!
I'm super tired so I'm cutting this short again tonight but I wanted to say a quick thank you to Tim and Rose for everything they've been doing lately. You're really kind of orchestrating EVERYTHING I don't have time/energy/know-how to do and we love you both for all of it. You're finding us resources for things and people we didn't even know we needed resources for. You pretty much rock and stuff. ;) Thanks!
As soon as he got home the cats all came in the bedroom to investigate and Freckles laid on the bed all stretched out with him and kept him company for hours. It's good to be home.
Of course because of the strange schedule David somehow got a bit dehydrated and his neck is hurting from being jostled around so much and he ended up with a migraine. Welcome home, here's a migraine! I got him pretty drugged up (safely drugged... if there is such a thing) and he's sleeping now. YAY FOR SLEEP!
Tomorrow the nurse from home health comes to check in on things and offer her expertise. I know we've already come so far but I feel like this journey has just begun and I've got a list in my head a mile long of things I know I need to do and learn but I just can't get them out in any kind of orderly fashion. Handy.
One kind of cool thing I realized today, we've had a large whiteboard hanging on the wall in our bedroom for years. I know, totally classy decor. It's an excellent way to keep track of med schedules and things like that, kind of like they have in the hospital. I never knew it would serve a functional purpose other than drawing pictures and jotting down random shopping list items. I'm more organized in some regards than I ever thought I'd be and in other regards... yeah... not so much!
I'm super tired so I'm cutting this short again tonight but I wanted to say a quick thank you to Tim and Rose for everything they've been doing lately. You're really kind of orchestrating EVERYTHING I don't have time/energy/know-how to do and we love you both for all of it. You're finding us resources for things and people we didn't even know we needed resources for. You pretty much rock and stuff. ;) Thanks!
Tuesday, January 24, 2012
Short and Sweet
Today I'm having a hard time putting sentences together and keeping my thoughts clear. Not in a bad way, just in a busy way!
Today we found out David is coming home tomorrow! TOMORROW! Always with that word! Our fingers are crossed that they mean it for real! Now I have to coordinate his discharge info, meds, equipment rental/delivery/setup/training, david delivery *snicker*, care coordination. We decided, with the urging of the oncologist, that we're going to do home health with a bridge to hospice which as I understand it means home health with more of the services that hospice allows. Or stated otherwise... hospice with chemo and physical therapy. We may be proven otherwise but that's what we gather from everything that was said. It would be easier to navigate this path if we had fewer people helping to coordinate but I suppose they each have their niche to fill and theoretically they work well together. If all goes as planned David will be happily watching the DVR'd Rose Bowl game tomorrow night.. the very game that was on when he was admitted to the hospital 22 days ago. TWENTY TWO DAYS AGO! Holy smokes. That makes me tired just thinking about it.
No dramatic stories tonight, just time to clean a bit then pass out and get ready for a huge day tomorrow. Please don't let anything get in the way of making this happen.
Today we found out David is coming home tomorrow! TOMORROW! Always with that word! Our fingers are crossed that they mean it for real! Now I have to coordinate his discharge info, meds, equipment rental/delivery/setup/training, david delivery *snicker*, care coordination. We decided, with the urging of the oncologist, that we're going to do home health with a bridge to hospice which as I understand it means home health with more of the services that hospice allows. Or stated otherwise... hospice with chemo and physical therapy. We may be proven otherwise but that's what we gather from everything that was said. It would be easier to navigate this path if we had fewer people helping to coordinate but I suppose they each have their niche to fill and theoretically they work well together. If all goes as planned David will be happily watching the DVR'd Rose Bowl game tomorrow night.. the very game that was on when he was admitted to the hospital 22 days ago. TWENTY TWO DAYS AGO! Holy smokes. That makes me tired just thinking about it.
No dramatic stories tonight, just time to clean a bit then pass out and get ready for a huge day tomorrow. Please don't let anything get in the way of making this happen.
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