The xray on Karin's arm did not show any fractures. We were told that the cancer causes micro fractures that are too small to show on the xrays, which causes very sharp pains, and that it will be probably 2 weeks before the radiation starts to lessen the bone pain there. We got a sling for her arm and that has helped to reduce weight/strain on her shoulder. Her arm still gives her very sharp pains when she gets in and out of bed and it is very difficult for her to get comfortable in bed, and she has general weakness that makes it hard to get in and out of chairs, and she's dizzy and unsteady (may be mostly from the heavy pain meds). She also gets tired and has to sleep every couple hours, and wakes every few hours in the night. But she's gaining strength and in good spirits much of the time, and able to sit and use her computer on occasion.
Family is coming into town today for her birthday tomorrow.
Saturday, September 27, 2008
Backing Up to Thursday at the Hospital
I have a bit of catching up to do, so first I will tell about my final day at the hospital...
By Thursday morning, I was anxious to go home. We had been told on Wednesday afternoon that when the doctor had come that afternoon (while I was gone at my radiation appt), he had said that I could go home that day if I wanted to -- but of course, normally he would see me first before I left. It was late and I was way too tired, so we did not leave. And we did want to talk to the doctor. So on Thursday morning, we were going with the assumption that we were leaving that day -- but we had to wait for the doctor. Apparently, despite the fact he had said all that on Wednesday, he had not filled out my discharge papers. So we waited... and waited...
Thursday morning, we sat around and watched some TV. And we had a pet therapy visit!! :) A woman asked if we would like her to come in with a dog for pet therapy. So we had a furry little visitor!! :) That was fun. I have heard about such things before, but it was interesting to experience being on the receiving end of pet therapy. :) It was really nice!! Even though I had my husband with me and was waiting to go home, it still really lifted my spirits. :) So I imagine that it could really do wonders for someone alone in the hospital or who is there for a long time.
Unfortunately, I didn't sleep most of Wednesday night. For some reason, I was not sleepy. I worked on blogging and email, but because of my left arm pain, it was hard to get much done. But overall, I felt pretty good during the night (except the left arm). Then in the morning, I started to get panicky again. I felt miserable. I was anxious, panicky, hot, etc. Apparently this is caused by my new pain patch medication. This is NOT a fun side effect! I do have some anxiety medication to take for it though. And the pain medicine really does seem to work well. It truly replaced my epidural in keeping my incision out of pain. Hooray! I had been really nervous about that. I started this week with 2 pain patches on my back (we started 12 hours before the epidural was removed), which last for 3 days.
It also felt soooo good to have the other stuff taken off my back!! There had been LOTS of tape on my back from my epidural. I would have thought that it would have hurt to take it all off -- but it felt GREAT!!!! And whenever I'd get out of bed, Steve (or my mom, when she was around) would lightly scratch or tickle my back. It was the absolute best feeling in the world now that my skin had been freed from all that tape!!!!! :) :)
So the doctor finally appeared around noon -- and he said I could go home!!!! YAY!!!! :) :) I was surprised to discover that he was going to remove my bandage and that I would go home with NOTHING on it! yikes!!! I had never even looked at the bandage while in the hospital. I always told the nurses that I didn't want to see it. ;) But when they would comment, they always said it looked great. It felt very big and went across the right side of my abdomen (but not fully around my body). So when he removed it, there was a LOT of tape yet again!! I was nervous.... but again, it was the BEST feeling to have that tape peeled off of me!!!! :) :) Then... he commented that I needed to make an appointment for Monday to have the staples removed. WHAT???!!!! No, I did not know I had staples. Of course, Steve and my dad knew everything. But I didn't want them to inform me of the conversation they had with the surgeon after the surgery on Friday. ;) So I did not like hearing about staples or about their removal!! After the bandage was gone, I did have some strange sensations though -- and did not like thinking about those being caused by you-know-whats in my body. ICK!!! Ok, change of subject. ;) ha.
In the conversation with the doctor, I also heard something vague about another detail from their conversation post-surgery on Friday, which Steve knew I wouldn't want to hear. The doctor had said that the surgery went very well. But there was some issue related to "the B word".... (that's the word I always ask nurses to not say to me when doing blood tests ;) ). I don't know what happened still, and I will probably keep it that way. ;) But I think it resulted in some low iron or something this week?? I am not educated in this area, I don't know the details, and I am not interested in being educated in this area or in knowing the details. ;) So anyway, we left the conversation at that. ha!
After that, Steve called our friend Bill to ask him to give us a hand. Bill swung by our house to get one of our cars (since we had no car at the hospital) and drove over to get us. Then they worked on loading everything from the hospital room into the car. A lot of things had accumulated -- like beautiful flowers, for instance!! :) But then we found out that it was going to take awhile longer until my discharge papers were complete. sigh. So I ate my last hospital meal. And then people arrived to take me off in an ambulance again to my radiation appointment!! I had no idea this was going to happen again. We thought we were going to be long gone... we'd drive home, then we'd head out for my radiation appointment on our own. But nope. I felt badly that Bill had to wait, but he had a chaplain friend he went to talk to.
So off we went again in an ambulance! This time, it was a different crew. And again, I was wheeled into the building in a stretcher. I like to make a grand entrance by arriving in front of a building in an ambulance and being wheeled in on a stretcher. ;) ha. Fortunately, they let Steve ride in the back again. It made me feel sort of claustrophobic back there, despite the fact the trip was so short. Shortly after my appointment, we were cleared to go home!!!!! :) :) :)
By Thursday morning, I was anxious to go home. We had been told on Wednesday afternoon that when the doctor had come that afternoon (while I was gone at my radiation appt), he had said that I could go home that day if I wanted to -- but of course, normally he would see me first before I left. It was late and I was way too tired, so we did not leave. And we did want to talk to the doctor. So on Thursday morning, we were going with the assumption that we were leaving that day -- but we had to wait for the doctor. Apparently, despite the fact he had said all that on Wednesday, he had not filled out my discharge papers. So we waited... and waited...
Thursday morning, we sat around and watched some TV. And we had a pet therapy visit!! :) A woman asked if we would like her to come in with a dog for pet therapy. So we had a furry little visitor!! :) That was fun. I have heard about such things before, but it was interesting to experience being on the receiving end of pet therapy. :) It was really nice!! Even though I had my husband with me and was waiting to go home, it still really lifted my spirits. :) So I imagine that it could really do wonders for someone alone in the hospital or who is there for a long time.
Unfortunately, I didn't sleep most of Wednesday night. For some reason, I was not sleepy. I worked on blogging and email, but because of my left arm pain, it was hard to get much done. But overall, I felt pretty good during the night (except the left arm). Then in the morning, I started to get panicky again. I felt miserable. I was anxious, panicky, hot, etc. Apparently this is caused by my new pain patch medication. This is NOT a fun side effect! I do have some anxiety medication to take for it though. And the pain medicine really does seem to work well. It truly replaced my epidural in keeping my incision out of pain. Hooray! I had been really nervous about that. I started this week with 2 pain patches on my back (we started 12 hours before the epidural was removed), which last for 3 days.
It also felt soooo good to have the other stuff taken off my back!! There had been LOTS of tape on my back from my epidural. I would have thought that it would have hurt to take it all off -- but it felt GREAT!!!! And whenever I'd get out of bed, Steve (or my mom, when she was around) would lightly scratch or tickle my back. It was the absolute best feeling in the world now that my skin had been freed from all that tape!!!!! :) :)
So the doctor finally appeared around noon -- and he said I could go home!!!! YAY!!!! :) :) I was surprised to discover that he was going to remove my bandage and that I would go home with NOTHING on it! yikes!!! I had never even looked at the bandage while in the hospital. I always told the nurses that I didn't want to see it. ;) But when they would comment, they always said it looked great. It felt very big and went across the right side of my abdomen (but not fully around my body). So when he removed it, there was a LOT of tape yet again!! I was nervous.... but again, it was the BEST feeling to have that tape peeled off of me!!!! :) :) Then... he commented that I needed to make an appointment for Monday to have the staples removed. WHAT???!!!! No, I did not know I had staples. Of course, Steve and my dad knew everything. But I didn't want them to inform me of the conversation they had with the surgeon after the surgery on Friday. ;) So I did not like hearing about staples or about their removal!! After the bandage was gone, I did have some strange sensations though -- and did not like thinking about those being caused by you-know-whats in my body. ICK!!! Ok, change of subject. ;) ha.
In the conversation with the doctor, I also heard something vague about another detail from their conversation post-surgery on Friday, which Steve knew I wouldn't want to hear. The doctor had said that the surgery went very well. But there was some issue related to "the B word".... (that's the word I always ask nurses to not say to me when doing blood tests ;) ). I don't know what happened still, and I will probably keep it that way. ;) But I think it resulted in some low iron or something this week?? I am not educated in this area, I don't know the details, and I am not interested in being educated in this area or in knowing the details. ;) So anyway, we left the conversation at that. ha!
After that, Steve called our friend Bill to ask him to give us a hand. Bill swung by our house to get one of our cars (since we had no car at the hospital) and drove over to get us. Then they worked on loading everything from the hospital room into the car. A lot of things had accumulated -- like beautiful flowers, for instance!! :) But then we found out that it was going to take awhile longer until my discharge papers were complete. sigh. So I ate my last hospital meal. And then people arrived to take me off in an ambulance again to my radiation appointment!! I had no idea this was going to happen again. We thought we were going to be long gone... we'd drive home, then we'd head out for my radiation appointment on our own. But nope. I felt badly that Bill had to wait, but he had a chaplain friend he went to talk to.
So off we went again in an ambulance! This time, it was a different crew. And again, I was wheeled into the building in a stretcher. I like to make a grand entrance by arriving in front of a building in an ambulance and being wheeled in on a stretcher. ;) ha. Fortunately, they let Steve ride in the back again. It made me feel sort of claustrophobic back there, despite the fact the trip was so short. Shortly after my appointment, we were cleared to go home!!!!! :) :) :)
Friday, September 26, 2008
We're Home!
This is Steve. We came home Thursday afternoon, and Kevin did get his cast on his arm. We got delayed coming home and things were very hectic. Karin's surgery pain is under control but her arm pain from the cancer is getting worse, despite the strong pain meds she's on :-(. We're going in this morning for further x-rays on her arm.
Wednesday, September 24, 2008
You're Not Gonna Believe This....
My baby boy Kevin (age 4) BROKE HIS ARM!!!!!!!!!!!!!
Yes, he fractured his arm, and Mommy is in the hospital. This is soooo not good. :( He is doing ok though. And it actually happened last week. I think it was the morning that we were heading for the hospital - last Friday! I was concerned about it and might have looked into it then, but I had other things on my mind. And everyone else thought it was ok and we should wait and see. I'm extra paranoid about things, but I was also extra preoccupied. (Maybe it happened Thursday night? But I think it was actually the morning of surgery? Not sure now.)
I will write more later, but for now, here's a summary written up by my mom...
"Kevin had a stupid little fall last week. His Dad and I were there immediately after he fell. Neither of us felt it was anything significant. However, he complained of a sore arm for the next few days. We assumed a pulled muscle or something. But it continued through the weekend, and Mon. morning, his OT asked what was wrong. So I decided it was time to see the dr. The nurse practitioner thought that there was no way it was broken as he had full movement, but, because the OT was concerned, she wanted to have it X-rayed. It was Tues. before that happened, and Wed. before we had the results. He has a fractured humerus, so we have to see a pediatric orthopedist tomorrow. "
Poor Kevin!!!!! My poor Mom!!!!!!! :( :( :(
Yes, he fractured his arm, and Mommy is in the hospital. This is soooo not good. :( He is doing ok though. And it actually happened last week. I think it was the morning that we were heading for the hospital - last Friday! I was concerned about it and might have looked into it then, but I had other things on my mind. And everyone else thought it was ok and we should wait and see. I'm extra paranoid about things, but I was also extra preoccupied. (Maybe it happened Thursday night? But I think it was actually the morning of surgery? Not sure now.)
I will write more later, but for now, here's a summary written up by my mom...
"Kevin had a stupid little fall last week. His Dad and I were there immediately after he fell. Neither of us felt it was anything significant. However, he complained of a sore arm for the next few days. We assumed a pulled muscle or something. But it continued through the weekend, and Mon. morning, his OT asked what was wrong. So I decided it was time to see the dr. The nurse practitioner thought that there was no way it was broken as he had full movement, but, because the OT was concerned, she wanted to have it X-rayed. It was Tues. before that happened, and Wed. before we had the results. He has a fractured humerus, so we have to see a pediatric orthopedist tomorrow.
Poor Kevin!!!!! My poor Mom!!!!!!! :( :( :(
Ambulance Ride
An ambulance came to get me to take me to my radiation appointment this afternoon! :) While we waited for them to arrive, Steve and I took a short stroll in the hallway. WOW! My first time really walking -- and my first time leaving the room!!! :) We went very slow. I held onto Steve and wished I could hold onto the wall as well, but I can't use that arm. Bummer.Then they put me on a stretcher! I was nervous about this, because I felt out of control, felt too high, and felt claustrophobic. But the team who helped me was awesome. :) They made sure I didn't feel claustrophobic and they lowered me closer to the ground. It felt very weird though, going down the hallways of the hospital -- seeing outside my room! And then even riding down in an elevator. I didn't like that too much. ;) Then it was warm on the ambulance, which I didn't like. But it started to cool down, and they let Steve sit in the back. The drive was very short as well.
The ride back was actually kinda fun! ;)
Then we posed for a picture together back at my room. :) We only had our cell phone camera though.Getting set up for radiation was a little more painful than usual. But the ride outside in the fresh air was WONDERFUL!!!!! :) :)
Karin's Notes on Tuesday and Wednesday
Hi everyone! I had some stories that had been accumulating over the past couple days, so now I'm awake in the middle of the night and will tell some. :)
Like Steve mentioned, Tuesday was a major day. It was only my 3rd time getting out of bed since surgery on Friday. Each time, I went straight from the bed to a nearby chair. I was also feeling panicked, anxious, and uncomfortable. Janet came to help and visit again for a couple hours. Praise God that someone was with me when they were ready to unhook my epidural!!! Because Steve had headed home for a bit. Then right as Janet was walking out the door, Kathy (another nurse friend from church showed up :) ). Amazing timing! By the end of the day, the hospital had removed all my tubes!!! I was so thankful for both Janet and Kathy coming that day!!
Now that tubes were out, Steve and I were becoming pros at figuring out our own systems of getting out of the bed. This was no small feat (and still isn't). My left shoulder is in severe pain (from cancer) and my right side /abdomen is in severe pain (from surgery). Not good. But we're getting it down now. :)
My pain medications started to change pretty radically - but the only real effect so far has been that I'm not hooked up to anything anymore. I did feel pretty out of it all day Tuesday though, as I had a lot of crazy things in my system.
But I actually saw the other side of my room on Tuesday!! ;) I hadn't even seen all sides before!
Wednesday began in about the same condition -- improving physically, but feeling really weird and over-medicated.
Like Steve mentioned, Tuesday was a major day. It was only my 3rd time getting out of bed since surgery on Friday. Each time, I went straight from the bed to a nearby chair. I was also feeling panicked, anxious, and uncomfortable. Janet came to help and visit again for a couple hours. Praise God that someone was with me when they were ready to unhook my epidural!!! Because Steve had headed home for a bit. Then right as Janet was walking out the door, Kathy (another nurse friend from church showed up :) ). Amazing timing! By the end of the day, the hospital had removed all my tubes!!! I was so thankful for both Janet and Kathy coming that day!!
Now that tubes were out, Steve and I were becoming pros at figuring out our own systems of getting out of the bed. This was no small feat (and still isn't). My left shoulder is in severe pain (from cancer) and my right side /abdomen is in severe pain (from surgery). Not good. But we're getting it down now. :)
My pain medications started to change pretty radically - but the only real effect so far has been that I'm not hooked up to anything anymore. I did feel pretty out of it all day Tuesday though, as I had a lot of crazy things in my system.
But I actually saw the other side of my room on Tuesday!! ;) I hadn't even seen all sides before!
Wednesday began in about the same condition -- improving physically, but feeling really weird and over-medicated.
Going Home Tomorrow !
We were taken by ambulance for a radiation treatment today (more on that later). When we got back, we found out that the doctor had come by and had said that normally he would like to talk to the patient on the day of discharge, but if we want to go home today, we can !! :-o
We were shocked. For one thing, they've made it clear that their waiting for a bowel movement to verify the bowels have recovered properly, and that has not happened. But they said that the bowels are sounding good and since they've given laxatives they are not worried.
But Karin was exhausted from our outing and not we've got some questions for the doctor and she wasn't emotionally prepared to go home today, so we're going to spend one more night.
We were shocked. For one thing, they've made it clear that their waiting for a bowel movement to verify the bowels have recovered properly, and that has not happened. But they said that the bowels are sounding good and since they've given laxatives they are not worried.
But Karin was exhausted from our outing and not we've got some questions for the doctor and she wasn't emotionally prepared to go home today, so we're going to spend one more night.
Much Progress !
Sorry for no updates yesterday! I know a lot of people have been anxiously waiting for news and wondering what's happening. It was a busy day. It was actually the most difficult day for me (Steve) since surgery, but it was ultimately a very successful day.
The challenges yesterday were caused by over-medication. She was being transitioned from IV pain meds to non-IV pain meds, and her system was getting overloaded.
During much of the day she was extremely sedated. She slept ok but she had difficulty fully awake. Many times during the day when she tried to be awake she had brief blips of consciousness every few seconds.. mid-sentence her eyes would suddenly roll upward and her eyelids mostly close, then she'd immediately start to snap back awake and continue the sentence she was saying. She was aware of these blips and was fighting to stay awake. Sometimes when she'd suddenly knock-out, she would sleep for 1-10 minutes and then wake up again. It was very freaky to see her eyes roll up like that. I've never seen that happen to anyone before. Normally when a person's eyes close you see their eyes loose focus, but remain facing forward while their lids close. This did not look like that at all.
There were a couple times during the day, lasting about 30 minutes, when she felt very panicky, hot, agitated, disoriented, and slightly nauseous. These were the most difficult times for me, as she was begging me (in a panicked way) to help her calm down and I was at a loss for what to do.
On top of these difficulties, I was worried that she really needed to eat... she's only had one very small meal in 4 days. But she could not wake up enough to eat all day - she tried many times but with limited success. It is very hard to eat when you keep loosing consciousness while the food is in your mouth !! I was concerned in the morning that lack of food was contributing to her symptoms. Also I knew her hemoglobin counts had been slowly dropping since surgery and I was concerned that might be contributing to her difficulty with staying conscious. But as the day went on and we talked to nurses and doctors, they were all sure this was side-effects of the drug transitions so I felt less panicked.. though I've read the warning labels that all of these narcotic pain killers can suppress breathing functions - sometimes dangerously, so I was worried about that too.
But in the midst of all that, there was great progress in her physical condition !!
Her IVs, epidural, and 'pee bag' were removed. The slow-release pain patches worked well and her abdominal pain was even better controlled than previous days. She had much more ability to move about in bed and it become much easier to get out of bed. She's unsteady and weak but she's been getting out of bed frequently with minimal assistance - just a strong arm to help keep her steady.
I went home for an hour in the afternoon, while she slept, but turns out that I missed the epidural being removed. We never know when these things are going to happen. Thankfully our nurse friend Janet was here, and they gave Karin some anti-anxiety medication. Karin was scared about that coming out (the IVs too). Later in the day another nurse friend, Kathy, came to help too. We got much help and helpful tips from these personal nurses, delivered with more comfort and care than the regular nurses. The regular nurses are nice people, but Karin doesn't know them and they've got many other patients to juggle.
We slept very well last night with few disturbances. They didn't even try to get a blood draw at 4:30am this time (and haven't yet today).. which is probably a good sign that her lab results are improving. She's been able to be awake and alert this morning. She was awake for about 2 hours. She still was not able to really eat breakfast, because she got sleepy again about the time it arrived, and she's sleeping now.
Our radiation doctor came by this morning. She's going to take a wheelchair and little ambulance ride down the street for a radiation treatment today. We skipped that last 2 days because she wasn't well enough yet. This will be the first time she's left the room since Friday.
Release has not been specifically discussed yet. We've been told that they need to be sure that her bowels are fully working before she leaves (important after surgery on the midsection). I suspect that is the last big milestone to reach before discharge (assuming labs are looking good now, which I'm going to ask about, and assuming she keeps getting up frequently and getting stronger over the next 24 hours).
The challenges yesterday were caused by over-medication. She was being transitioned from IV pain meds to non-IV pain meds, and her system was getting overloaded.
During much of the day she was extremely sedated. She slept ok but she had difficulty fully awake. Many times during the day when she tried to be awake she had brief blips of consciousness every few seconds.. mid-sentence her eyes would suddenly roll upward and her eyelids mostly close, then she'd immediately start to snap back awake and continue the sentence she was saying. She was aware of these blips and was fighting to stay awake. Sometimes when she'd suddenly knock-out, she would sleep for 1-10 minutes and then wake up again. It was very freaky to see her eyes roll up like that. I've never seen that happen to anyone before. Normally when a person's eyes close you see their eyes loose focus, but remain facing forward while their lids close. This did not look like that at all.
There were a couple times during the day, lasting about 30 minutes, when she felt very panicky, hot, agitated, disoriented, and slightly nauseous. These were the most difficult times for me, as she was begging me (in a panicked way) to help her calm down and I was at a loss for what to do.
On top of these difficulties, I was worried that she really needed to eat... she's only had one very small meal in 4 days. But she could not wake up enough to eat all day - she tried many times but with limited success. It is very hard to eat when you keep loosing consciousness while the food is in your mouth !! I was concerned in the morning that lack of food was contributing to her symptoms. Also I knew her hemoglobin counts had been slowly dropping since surgery and I was concerned that might be contributing to her difficulty with staying conscious. But as the day went on and we talked to nurses and doctors, they were all sure this was side-effects of the drug transitions so I felt less panicked.. though I've read the warning labels that all of these narcotic pain killers can suppress breathing functions - sometimes dangerously, so I was worried about that too.
But in the midst of all that, there was great progress in her physical condition !!
Her IVs, epidural, and 'pee bag' were removed. The slow-release pain patches worked well and her abdominal pain was even better controlled than previous days. She had much more ability to move about in bed and it become much easier to get out of bed. She's unsteady and weak but she's been getting out of bed frequently with minimal assistance - just a strong arm to help keep her steady.
I went home for an hour in the afternoon, while she slept, but turns out that I missed the epidural being removed. We never know when these things are going to happen. Thankfully our nurse friend Janet was here, and they gave Karin some anti-anxiety medication. Karin was scared about that coming out (the IVs too). Later in the day another nurse friend, Kathy, came to help too. We got much help and helpful tips from these personal nurses, delivered with more comfort and care than the regular nurses. The regular nurses are nice people, but Karin doesn't know them and they've got many other patients to juggle.
We slept very well last night with few disturbances. They didn't even try to get a blood draw at 4:30am this time (and haven't yet today).. which is probably a good sign that her lab results are improving. She's been able to be awake and alert this morning. She was awake for about 2 hours. She still was not able to really eat breakfast, because she got sleepy again about the time it arrived, and she's sleeping now.
Our radiation doctor came by this morning. She's going to take a wheelchair and little ambulance ride down the street for a radiation treatment today. We skipped that last 2 days because she wasn't well enough yet. This will be the first time she's left the room since Friday.
Release has not been specifically discussed yet. We've been told that they need to be sure that her bowels are fully working before she leaves (important after surgery on the midsection). I suspect that is the last big milestone to reach before discharge (assuming labs are looking good now, which I'm going to ask about, and assuming she keeps getting up frequently and getting stronger over the next 24 hours).
Tuesday, September 23, 2008
Monday, September 22, 2008
Another Post from Karin :)
It's Karin posting again. :) I've been doing a lot of snoozing all afternoon and evening. I always feel like I was asleep for a long time, but apparently the longest has usually been about an hour. For some reason, people really enjoy coming in to interrupt me. ;) ha.
This afternoon, they added 2 pain patches to my back in an initial attempt of switching pain meds. But at this point, they haven't taken anything else away yet. I still have the IV, where I can give myself a dose of narcotics every 8 minutes by a button -- and I still have the epidural, which is continually giving me a dose, plus I can give myself some extra through a 2nd button every 20 minutes. So the goal is to head towards just the pain patches and oral pain meds. The pain patch must really be helping, because I have not been in pain when I've been waking up today! Normally after snoozing for a bit (and thus not having pressed a button in awhile), I'm really in pain. But I hope that the pain patches are effective enough to truly REPLACE the other things I have (of course, pills are going to be added back too).
I was amazed at what I was able to eat tonight! And I even topped off my pizza crust and yogurt dinner with chocolate ice cream!! Woo hoo!!!! :)
A few stories of special blessings got bypassed yesterday, so I'm backtracking a bit. I wanted to mention that doctors and nurses have both been mentioning since Saturday that I look really good for someone who just had major surgery. So praise God for that!!! :) I'm still not sure when I'll be going home. Before surgery, the doctor had said 4-5 days in the hospital (that would have been Tues or Wed). But on Friday, apparently he told Steve and my dad that I might be able to go home Tuesday, since everything went so well. However, a date has never been mentioned again....and on Monday night here at 9:45pm, I don't feel ready to go home!! I have only been out of bed twice, and both times were a major ordeal. Plus I didn't even really walk much either time. It was just a quick trip from bed to chair and back again later. But my movement did definitely improve today and the return to the bed was better than when I had gotten out this morning. I had thought that I'd attempt this again today, but I've just been so tired that I've been sleeping and sleeping and sleeping. And of course, I've got a variety of tubes in my body, which would need to not be there in order to go home. ;)
My surgeon (urologist) has come daily for a brief visit to follow up on my progress. And today, my oncologist came as well. Apparently my urologist wanted her to come to be involved in deciding on the pain med switches. It has consistently been made clear to me that my combo of the epidural, plus the other IV meds is unusual. But I need the epidural for the surgery, then I need the other for the cancer-related pains. Steve has learned to be very on top of the epidural bag progress, as it's something very particular and take the pharmacy 1.5 hours to prepare. So after running out 2 times this weekend, Steve learned to predict when we have a couple hours left and to ask the nurse to go ahead and order a new one. As I've told Steve so many times over the recent weeks, he is my hero!!!!! :)
But on top of these 2 doctors visiting related to my care, I had a very sweet unexpected visit yesterday from my general physician!! I had seen her on the day we found out the bad news. After the orthopedist called me that morning, he sent us to talk to my physician for her to share the information (beyond the basic which he apologized for needing to share via the phone). So anyway, she came to check on me in the hospital! We had a very nice visit. She told me that her whole office has been concerned about me. And after mentioning God, she told me that they are praying for me and that she has wanted to add me to her church's prayer chain, but she couldn't due to privacy laws. So I gave her permission for people to pray for me. ;) She emphasized how much her staff was thinking of me and wanting to help. In fact, they want to bring meals and one person in particular wants to provide childcare for us!! Wow! I felt so blessed by her visit and by all that she told me in regards to the prayers and offers for help from her office!!
This afternoon, they added 2 pain patches to my back in an initial attempt of switching pain meds. But at this point, they haven't taken anything else away yet. I still have the IV, where I can give myself a dose of narcotics every 8 minutes by a button -- and I still have the epidural, which is continually giving me a dose, plus I can give myself some extra through a 2nd button every 20 minutes. So the goal is to head towards just the pain patches and oral pain meds. The pain patch must really be helping, because I have not been in pain when I've been waking up today! Normally after snoozing for a bit (and thus not having pressed a button in awhile), I'm really in pain. But I hope that the pain patches are effective enough to truly REPLACE the other things I have (of course, pills are going to be added back too).
I was amazed at what I was able to eat tonight! And I even topped off my pizza crust and yogurt dinner with chocolate ice cream!! Woo hoo!!!! :)
A few stories of special blessings got bypassed yesterday, so I'm backtracking a bit. I wanted to mention that doctors and nurses have both been mentioning since Saturday that I look really good for someone who just had major surgery. So praise God for that!!! :) I'm still not sure when I'll be going home. Before surgery, the doctor had said 4-5 days in the hospital (that would have been Tues or Wed). But on Friday, apparently he told Steve and my dad that I might be able to go home Tuesday, since everything went so well. However, a date has never been mentioned again....and on Monday night here at 9:45pm, I don't feel ready to go home!! I have only been out of bed twice, and both times were a major ordeal. Plus I didn't even really walk much either time. It was just a quick trip from bed to chair and back again later. But my movement did definitely improve today and the return to the bed was better than when I had gotten out this morning. I had thought that I'd attempt this again today, but I've just been so tired that I've been sleeping and sleeping and sleeping. And of course, I've got a variety of tubes in my body, which would need to not be there in order to go home. ;)
My surgeon (urologist) has come daily for a brief visit to follow up on my progress. And today, my oncologist came as well. Apparently my urologist wanted her to come to be involved in deciding on the pain med switches. It has consistently been made clear to me that my combo of the epidural, plus the other IV meds is unusual. But I need the epidural for the surgery, then I need the other for the cancer-related pains. Steve has learned to be very on top of the epidural bag progress, as it's something very particular and take the pharmacy 1.5 hours to prepare. So after running out 2 times this weekend, Steve learned to predict when we have a couple hours left and to ask the nurse to go ahead and order a new one. As I've told Steve so many times over the recent weeks, he is my hero!!!!! :)
But on top of these 2 doctors visiting related to my care, I had a very sweet unexpected visit yesterday from my general physician!! I had seen her on the day we found out the bad news. After the orthopedist called me that morning, he sent us to talk to my physician for her to share the information (beyond the basic which he apologized for needing to share via the phone). So anyway, she came to check on me in the hospital! We had a very nice visit. She told me that her whole office has been concerned about me. And after mentioning God, she told me that they are praying for me and that she has wanted to add me to her church's prayer chain, but she couldn't due to privacy laws. So I gave her permission for people to pray for me. ;) She emphasized how much her staff was thinking of me and wanting to help. In fact, they want to bring meals and one person in particular wants to provide childcare for us!! Wow! I felt so blessed by her visit and by all that she told me in regards to the prayers and offers for help from her office!!
Kids Coming
Grandma is coming to visit with the kids, and she's bringing me leftovers for dinner.
Grandpa flew home this morning (after bringing me starbucks), and got his luggage lost on the way way.
Karin ate well at dinner - 4 oz yogurt, pizza crust, fruit. And she's contemplating the cookie bouquet that Noelle sent :-)
Grandpa flew home this morning (after bringing me starbucks), and got his luggage lost on the way way.
Karin ate well at dinner - 4 oz yogurt, pizza crust, fruit. And she's contemplating the cookie bouquet that Noelle sent :-)
Pizza Crust
Karin didn't really manage to fully wake up when dinner arrived. She just woke up enough now to sit up and eat. This is her first meal with real solids. Right now she is eating a thick pizza crust - she 'ordered' cheese pizza, but felt most like eating the crust so far - so I cut of most off the crust from the huge slice they brought .. and she just finished it !! :-) VERY good to see her eating - her body is ready and she needs to rebuild some strength.
Sleep
As we'd been warned, sleeping in a hospital is sometimes difficult. Several times today when Karin got tired and tried to sleep, it was right at that time that we had a flow of nurses and doctors checking on status and such. At one point, she had just got into a good sleep when a nurse came in to do a blood test (this has happened several times actually), and today it was especially painful (I'll spare the details for the squeamish, including Karin who will read this before long I'm sure).
She's finally had a peaceful period of sleep now for about 1 hour. She got really cold an hour ago, I pray she is feeling better when she wakes up.
She's finally had a peaceful period of sleep now for about 1 hour. She got really cold an hour ago, I pray she is feeling better when she wakes up.
Cracker
Karin ate 1 saltine cracker just now. Her first solid food in 3.5 days. She's scared about how her system will react.
Post from Karin !
Hi everyone - this is Karin! I'm on my computer for the first time. But honestly, I enjoyed it a lot more when Steve was just reading messages to me instead. ;) He's been taking such good care of me!!!! I'm not really enjoying this sitting up stuff too much thus far, although I did make progress this morning. This is my 2nd time out of bed now, and I've been in this chair for about 3 hours. But getting here was quite an ordeal. It was painful and then when I got here, I kept feeling like I was blacking out and the nurse gave me oxygen again. Hopefully I'll be able to get past all of this very soon. I don't think I'm going to be able to write much cuz I can't get very comfortable to do this right now.
My liquid lunch will probably be arriving shortly. The doctor hasn't come yet today, and I'm nervous about what his plans for me might be. I'm not eager to get rid of this epidural.
I have soooo appreciated all your wonderful messages!!!!!! I haven't been able to check email, but Steve has been reading me all the posts on the blog - and I've loved it!!!!! :) :) Thank you all sooooo much!!!!!! I even got a delivery today of printed out messages from the hospital's web site. Thanks for those too!!! That was fun to receive. :) And thanks for all the other special things that have arrived at my door!! Plus my family has delivered a ton of cards from home, so I have quite an arrangement of things on a counter across from my bed -- including pictures of my darling boys and 3 drawings taped on the wall that Kevin did for me this weekend. :) On one of them, he wrote "MOM" all by himself. And on another, he asked my mom to write this: "I love you and you love me! I'm sorry that you are sick and don't feel good."
Unfortunately, I ended up feeling pretty bad on Sat. night at the time the boys first came to visit. And Kevin was freaked out by all the tape on me. And I couldn't talk much, because I didn't have much energy. So fortunately, things went much better last night on their 2nd visit. It was great to be able to see and talk to my precious Kevin. :) And Kien's face just lit up with his mouth wide open, so-happy-to-see-Mommy smile!!!!! My dad stopped by this morning to say good-bye and to bring Steve a Starbucks before my mom took him to the airport. So my mom is now home alone with the kids, and it feels odd that Steve and I are hanging out here while my mom takes care of my kiddos. But they are definitely in great hands, and I'm soooo appreciative of all my mom is doing!!!!
Well, I think that's all for now. I want to lay back again.
My liquid lunch will probably be arriving shortly. The doctor hasn't come yet today, and I'm nervous about what his plans for me might be. I'm not eager to get rid of this epidural.
I have soooo appreciated all your wonderful messages!!!!!! I haven't been able to check email, but Steve has been reading me all the posts on the blog - and I've loved it!!!!! :) :) Thank you all sooooo much!!!!!! I even got a delivery today of printed out messages from the hospital's web site. Thanks for those too!!! That was fun to receive. :) And thanks for all the other special things that have arrived at my door!! Plus my family has delivered a ton of cards from home, so I have quite an arrangement of things on a counter across from my bed -- including pictures of my darling boys and 3 drawings taped on the wall that Kevin did for me this weekend. :) On one of them, he wrote "MOM" all by himself. And on another, he asked my mom to write this: "I love you and you love me! I'm sorry that you are sick and don't feel good."
Unfortunately, I ended up feeling pretty bad on Sat. night at the time the boys first came to visit. And Kevin was freaked out by all the tape on me. And I couldn't talk much, because I didn't have much energy. So fortunately, things went much better last night on their 2nd visit. It was great to be able to see and talk to my precious Kevin. :) And Kien's face just lit up with his mouth wide open, so-happy-to-see-Mommy smile!!!!! My dad stopped by this morning to say good-bye and to bring Steve a Starbucks before my mom took him to the airport. So my mom is now home alone with the kids, and it feels odd that Steve and I are hanging out here while my mom takes care of my kiddos. But they are definitely in great hands, and I'm soooo appreciative of all my mom is doing!!!!
Well, I think that's all for now. I want to lay back again.
Sunday, September 21, 2008
Heavenly Helpers
Saturday morning, while we were at the hospital, some wonderful friends from church came over and did a bunch of yard work that's been over-due and I don't know when I would have time to get to. I'm SOO thankful for our heavenly healpers. The yard looks beautiful !
Karin was able to use my PC beside her bed to select the photos above :-) She's eager to resume being the blogger, and I'm looking forward to it too! :-)
Karin was able to use my PC beside her bed to select the photos above :-) She's eager to resume being the blogger, and I'm looking forward to it too! :-)
Peaceful Day
Today went by quickly and peacefully. Karin had some appetite today (though still a purely liquid diet), was in good spirits and well animated. She didn't get out of bed today though.. basically just because the nurse never pushed it, but the bed was up in a sitting position most of the day. She can move her arms and legs well, but at the end of the day she started feeling a bit stuck to the bed and actually getting interested in getting out, but she was able to shift around a little and start to feel better, and then the kids came to visit before bedtime and after they left she fell asleep. She's looking very good and definitely gaining strength.
Personal Nurse
Backtracking a bit.. More info about yesterday. A friend of ours who is a pediatric nurse had the day off work yesterday and offered to come help Karin. She's got a great bed-side manner, and being treated with the same gentleness as a kid is great for Karin! :-) So we took her up on the offer. She was here at two different times yesterday, for quite a few hours. She was comforting and a huge help. The nurses here are pretty good but they've got a lot to do. It was wonderful to have a personal nurse for a good part of the day yesterday, especially with getting Karin in and out of bed. It also enabled me to go get lunch yesterday without Karin being alone.
I hesitated to mention this yesterday, because Karin isn't ready for visitors in general, but Karin asked me to post about it today because it was such a blessing. :-)
I hesitated to mention this yesterday, because Karin isn't ready for visitors in general, but Karin asked me to post about it today because it was such a blessing. :-)
Painful Night .. Better Morning
Karin and I both were so exhaused last night that we were in a mental fog from about 10pm onwards. The night is pretty much a foggy blur to me. I have no idea how often we woke up. I slept next to her in a recliner (as I did the first night). This time I was facing her with my head near her feet. I recall on one occation in the night that after I woke she said that she had been poking me with her foot to wake me up.
Strangely she had more pain last night than the first night. Maybe some of the pain meds from surgery were still in her system that first night. Or maybe she was sleeping for longer stretches of time last night so not getting pain meds as often. I don't know how often we woke and don't really even remember much details of being awake, but I do recall her being in constant pain. I know yesterday I described that she has a local numbing medication via epidural to the incision area (her right side), which are delivered continously via a pump. She also has pain meds available via her IV, but these are on demand only. She has a button to press which will release a dose of the pain meds. It's limited by a machine so she cannot overdose. The first night I was making sure she woke up every hour or two to check on her pain level. Each time she was just in very mild discomfort, and pushed the button once. Since we were both very knocked out last night, I don't know how often we woke up, so her pain might have been increased just by not getting a dose of that general pain medication as often.
I just realized another difference between last night and the first night. The first night the bed was flat. During the day yesterday the head of her bed was adjusted to various angles at different times. She slept with the head of the bed still angled up at about 45 degrees. Maybe that contributed to her pain during the night. At some point during the night she was feeling uncomfortable because she had slid down to a slouched position in bed, and her and I worked together to get her scooted up to a more comfortable position.
At around 6am when Karin woke up hurting again, we both struggled to stay awake long enough to get her pain under control. The way the machine works, she can only release a dose of medication every 8 mintues. During the night we were generally so tired that we'd wake up only for a few minutes and fall asleep again before she was able to get enough medication into her system to get her pain under control. It was a really struggle to stay awake at 6 this morning, but we managed to do it and get her pain under control in about 30 minutes.
When breakfast arrived, Karin was actually starting to feel hungry for the first time since surgery, which is a good sign of improving. :-) Yesterday she only had a few spoonfuls of jello and broth and icees that I fed her. Today she was able to feed herself! :-) She was able to do this because she was able to be confortable with the bed proping her all the way into a sitting possition and her right shoulder (which was somehow injured from surgery) is feeling better today, so I wheeled a table over her legs and she could use a spoon in her right hand. She definitely ate more at breakfast than all 3 meals of yesterday combined, though it still was not a lot. She ate some jello and some beaf broth and drank a cup of apple juice and half an icee. She didn't have any nausea from eating at all.
During breakfast I opened cards that had been brought from the house yesterday and she was able to sit up in bed and right them herself, feeling very good.
Then her dad showed up with a pumpkin latte and muffin for me for breakfast! I didn't have a breakfast plan and was very appreciative of being taken care of myself while taking care of my Sweetie. Dad stayed for a little bit and they are taking the boys to church this morning. I'm staying with Karin.
It's 10 now and Karin is still feeling good and watching a little TV. She's feeling well enough that we've discovered what someone warned us about, that laugher after a surgery like this is not a good thing - it hurts.
We're not sure when she'll be ready for visitors yet. She will be forced out of bed again today at least once (I'm guessing maybe twice), and that could be tramatic.
Strangely she had more pain last night than the first night. Maybe some of the pain meds from surgery were still in her system that first night. Or maybe she was sleeping for longer stretches of time last night so not getting pain meds as often. I don't know how often we woke and don't really even remember much details of being awake, but I do recall her being in constant pain. I know yesterday I described that she has a local numbing medication via epidural to the incision area (her right side), which are delivered continously via a pump. She also has pain meds available via her IV, but these are on demand only. She has a button to press which will release a dose of the pain meds. It's limited by a machine so she cannot overdose. The first night I was making sure she woke up every hour or two to check on her pain level. Each time she was just in very mild discomfort, and pushed the button once. Since we were both very knocked out last night, I don't know how often we woke up, so her pain might have been increased just by not getting a dose of that general pain medication as often.
I just realized another difference between last night and the first night. The first night the bed was flat. During the day yesterday the head of her bed was adjusted to various angles at different times. She slept with the head of the bed still angled up at about 45 degrees. Maybe that contributed to her pain during the night. At some point during the night she was feeling uncomfortable because she had slid down to a slouched position in bed, and her and I worked together to get her scooted up to a more comfortable position.
At around 6am when Karin woke up hurting again, we both struggled to stay awake long enough to get her pain under control. The way the machine works, she can only release a dose of medication every 8 mintues. During the night we were generally so tired that we'd wake up only for a few minutes and fall asleep again before she was able to get enough medication into her system to get her pain under control. It was a really struggle to stay awake at 6 this morning, but we managed to do it and get her pain under control in about 30 minutes.
When breakfast arrived, Karin was actually starting to feel hungry for the first time since surgery, which is a good sign of improving. :-) Yesterday she only had a few spoonfuls of jello and broth and icees that I fed her. Today she was able to feed herself! :-) She was able to do this because she was able to be confortable with the bed proping her all the way into a sitting possition and her right shoulder (which was somehow injured from surgery) is feeling better today, so I wheeled a table over her legs and she could use a spoon in her right hand. She definitely ate more at breakfast than all 3 meals of yesterday combined, though it still was not a lot. She ate some jello and some beaf broth and drank a cup of apple juice and half an icee. She didn't have any nausea from eating at all.
During breakfast I opened cards that had been brought from the house yesterday and she was able to sit up in bed and right them herself, feeling very good.
Then her dad showed up with a pumpkin latte and muffin for me for breakfast! I didn't have a breakfast plan and was very appreciative of being taken care of myself while taking care of my Sweetie. Dad stayed for a little bit and they are taking the boys to church this morning. I'm staying with Karin.
It's 10 now and Karin is still feeling good and watching a little TV. She's feeling well enough that we've discovered what someone warned us about, that laugher after a surgery like this is not a good thing - it hurts.
We're not sure when she'll be ready for visitors yet. She will be forced out of bed again today at least once (I'm guessing maybe twice), and that could be tramatic.
Thanks for Comments
I've been reading the comment replies to Karin and she really enjoys hearing them. Thanks!
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