LTAC
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Tiffany Chen
Jun 25, 2009, 12:54:32 AM6/25/09
to ipray4anderson
Hi all,
So we're all pretty much settled in to Kindred Hospital, the LTAC that we moved to from MD Anderson. They've done a decent job communicating back and forth between the hospitals. MD Anderson gets his blood work faxed to them daily. Here and there, MD Anderson calls Kindred to make sure they're doing what they should be (i.e. got a call about the platelet infusion, they rescheduled the chemo appointment due to the wound and the platelets being so low, and they've been pretty on top of it with regards to making sure that he has transportation arrangements for when we do need to go back there for treatment).
Things are a lot more relaxed here. We have unlimited access to linens, which is nice. I can do his bath and change his sheets daily without having to wait for people to bring supplies to me. They've been very nice here with regards to giving us the things we need and making him as comfortable as possible. Most of the staff have also been pretty considerate and don't usually barge in, slam doors, throw open all the lights whenever they feel like it, etc. They even put up signs for us before we moved here that let the staff know that Anderson's sensitive to light and sound. Also, since they deliver food on a regular schedule, it's been helping to regulate our eating schedule as well. He eats about 4 times a day now (vs. 2-3 times a day at MD Anderson). He's also been getting a little more rest here. All in all, things aren't too bad right now.
Prayer Requests:
Hope all of you are enjoying the summer. It's super hot and humid here. Well... outside the hospital that is. I did walk from the hospital to Chipotle... got lost for maybe half an hour but I found it and made it back. I walked around for 45 minutes and I was all red, sweating everywhere. I kind of did enjoy breathing in the humid air though (when it didn't smell like cigarette smoke, exhaust, or sewer). Hospital air is so dry and irritating to my respiratory tract.
Night everyone...
<3,
Tiff
So we're all pretty much settled in to Kindred Hospital, the LTAC that we moved to from MD Anderson. They've done a decent job communicating back and forth between the hospitals. MD Anderson gets his blood work faxed to them daily. Here and there, MD Anderson calls Kindred to make sure they're doing what they should be (i.e. got a call about the platelet infusion, they rescheduled the chemo appointment due to the wound and the platelets being so low, and they've been pretty on top of it with regards to making sure that he has transportation arrangements for when we do need to go back there for treatment).
Things are a lot more relaxed here. We have unlimited access to linens, which is nice. I can do his bath and change his sheets daily without having to wait for people to bring supplies to me. They've been very nice here with regards to giving us the things we need and making him as comfortable as possible. Most of the staff have also been pretty considerate and don't usually barge in, slam doors, throw open all the lights whenever they feel like it, etc. They even put up signs for us before we moved here that let the staff know that Anderson's sensitive to light and sound. Also, since they deliver food on a regular schedule, it's been helping to regulate our eating schedule as well. He eats about 4 times a day now (vs. 2-3 times a day at MD Anderson). He's also been getting a little more rest here. All in all, things aren't too bad right now.
Prayer Requests:
- Wound healing - since the area's been radiated, the tissues are going to heal more slowly than if he didn't receive radiation to the area. There's still drainage, but the doctor said it's to be expected. No wound vac because it might stimulate growth of tumor cells. MD Anderson said that they're going to contact the neurosurgeon for us to see if there's anything else that can be done for him as far as wound care. A nurse practitioner is going to stop by the hospital tomorrow to see him so hopefully she'll have some useful information for us... or even if she doesn't, it's very nice that she's coming here from MD Anderson. He also has some skin breakdown from all the tape coming on and off with the daily dressing changes. They're using skin prep now to hopefully protect his skin more. Pray that it doesn't get any worse. He's also got a little more pain now since he has an open wound. He also has a harder time finding a comfortable spot now too.
- Blood work & electrolytes - his white blood cells are still dropping. :( Pray that they level off and start climbing soon... Also, he got a platelet transfusion last night so today his platelets are back up. Pray that they stay there...
- Fear, Motivation and Comfort - He doesn't want to do much because he's afraid that his surgical scar is going to open up again. Even though the wound nurse and the doctor have both told him that the worst is over now and that he's safe to get out of bed and into the chair, he's still saying that "he can't". This is something that's come up quite a bit since his surgery in 2008. We let him lay in bed a lot during his recovery because he kept saying that "he can't". After a while, enough was enough and I had to tell him that there's a big difference between "can't" and "don't want to". (I started this email at about 10am... it is now 11:30pm). I had to heavily encourage him (partly against his will) to get into the chair today. He did end up sitting up for about an hour and a half and he tolerated it well. Hopefully he'll be able/willing to do it again tomorrow.
- PT/OT - We requested to switch PT's and the new one today seems to be more suited to us. He's very proactive and he sees problems and lets us know the steps he sees to get us to our goals. We're very glad that we've switched. Our OT is also very accommodating and she's been helping Anderson do some weight lifting in bed. He's been doing 3 pounds, but a lot of reps. He did some exercises with the thera-band too. Pretty much worked all his arm muscles. :) Pray that he'll continue to be motivated to do the exercises...
- Speech Therapy - they've sent out an order to have speech therapy do a consult. Anderson doesn't see much point in speech therapy but we'll see how it goes. The last speech therapist he had never rescheduled him to come back to finish his evaluation. Oh well. Maybe this one will fare better.
- Respiratory - he still has his phlegm, but the breathing treatments that the doc ordered seem to be helping him. He gets them every 6 hours and he looks fwd to them. He actually never tells respiratory to come back later whereas he always tells other people to come back later. He even asked me to learn how to turn on the nebulizer so that he could do it anytime he wanted to... which I thought was pretty funny. It reminded me of that time that he wanted to get the IV narcotic "for home". I did tell him that he could only get the med in the nebulizer every 6 hours and so far he's been pretty satisfied with it. Hope that the phlegm gets better so he won't even need the breathing treatments.
- Chinese Herbs - since he has such low platelets and the wound, his oncologist has pushed back his chemo infusion to next month. In the meantime, we've been doing Chinese herbal stuff. There has been some little twitching in his legs... pray that the herbs will help strengthen his body and detox his system.
- Infection - pray against any! The doc ordered blood and urine cultures today. The nurse told me that it was "just in case" so I really hope they come back negative. Urine seems clean to me.
- Continue to pray for a miracle of healing.
Hope all of you are enjoying the summer. It's super hot and humid here. Well... outside the hospital that is. I did walk from the hospital to Chipotle... got lost for maybe half an hour but I found it and made it back. I walked around for 45 minutes and I was all red, sweating everywhere. I kind of did enjoy breathing in the humid air though (when it didn't smell like cigarette smoke, exhaust, or sewer). Hospital air is so dry and irritating to my respiratory tract.
Night everyone...
<3,
Tiff
Tiffany Chen
Jun 25, 2009, 1:45:21 PM6/25/09
to ipray4anderson
Hi everyone,
Here comes that phrase again.... never a dull moment for Tifferson.
The MD Anderson Neurosurgery nurse practitioner came by this morning at 6 something am. *yawn*. Apparently they thought that the wound was more superficial than it is. They are recommending surgery to close it. We haven't made our final decision quite yet. Kelly's going to talk to his parents and we're all going to talk about it together. Anderson's afraid and also tired. He's been increasingly more frustrated everyday with his body and its limitations. Last night/this morning was also not very restful because of his phlegm.
They've scheduled the OR for him on Monday but we need to give them a decision by today.
Please pray for our decision and also the phlegm. Also pray for God to work to heal and comfort Anderson's heart.
<3,
Tiff
Here comes that phrase again.... never a dull moment for Tifferson.
The MD Anderson Neurosurgery nurse practitioner came by this morning at 6 something am. *yawn*. Apparently they thought that the wound was more superficial than it is. They are recommending surgery to close it. We haven't made our final decision quite yet. Kelly's going to talk to his parents and we're all going to talk about it together. Anderson's afraid and also tired. He's been increasingly more frustrated everyday with his body and its limitations. Last night/this morning was also not very restful because of his phlegm.
They've scheduled the OR for him on Monday but we need to give them a decision by today.
Please pray for our decision and also the phlegm. Also pray for God to work to heal and comfort Anderson's heart.
<3,
Tiff
Tiffany Chen
Jun 26, 2009, 1:58:07 AM6/26/09
to ipray4anderson
Hi all,
Anderson, Anderson's family and I all agree that we're going to proceed with the surgery on Monday. The greater risk would be not to do the surgery and leave his wound open for an eventual infection to develop.
What this means for us is that we'll be going back to MD Anderson just for the surgery and then for a few days of recovery. Best case scenario, we'll spend 24 hours in the ICU, then spend maybe another 48 on the plastic surgery floor and then come back to Kindred. We still have to work out the details with the surgeons and all, but from what we've gathered from our phone calls with the doctors, that's what's going to happen. MD Anderson is currently at capacity so we are waiting for a room to open up and then Anderson will be transferred back by ambulance.
The surgery will involve a skin graft and ... other stuff that I can't recall at the moment. The nurse said she's scheduled the OR for 10 hours and 95% of it will be done by plastic surgery and 5% by neurosurgery.
Chemo is obviously postponed while he recovers from surgery. While he's back at MD Anderson, the neurosurgeon will also order an MRI of his spine to see how he's responded to radiation (and the herbs).
Major concerns going into surgery are that his platelets are still pretty low. He got an infusion, but they are likely to drop low again because there hasn't been enough time for his bone marrow to recover from radiation. They will probably infuse him with lots of platelets. Another concern is his low white blood cell count. Surgery is added stress on the body and immune system. Also, his skin was radiated and will therefore heal VERY slowly. His skin is pretty delicate all along his spine right now and it also puts him at greater risk for bed sores/pressure ulcers.
So... right now our most urgent prayer requests are:
I was thinking about it earlier today and it seems like God's not letting us out of "high alert" mode. I still perk up at every odd noise, I'm watching him and his skin, his foley, his bowels... like a hawk. For the past month or so now... it's been "high alert" and it's mentally and emotionally draining, but it keeps us on our toes and it forces us to keep pressing on and not backslide or grow lazy or complacent. It's like you want to look left or right, but something always snaps you back to the straight and narrow.
This morning was a bit rough too, on top of the news of more surgery. His phlegm was keeping him up and in turn, keeping me up because he kept clearing his throat every few seconds. I'd also have to get up very frequently to get him water or a tissue or a bucket or something. And he always seemed to ask for something right after I got back into bed and pulled on the covers and right when the warmth and weight of the blankets started to invite me in to peaceful slumber, he'd ask for something else and I'd have to force myself to fling open the covers and brave the icy cold hospital air to get him what he needed. It happened at least 5 times before 8am. And then the food came. I really just wanted a tiny break, but he wanted to eat and he didn't want to wait.
Half asleep, I cut apart bite-sized portions of his canadian bacon, danish and scrambled eggs. He likes it when I make him "combos" and put 2 items in his mouth on the same fork. I also alternate salty and sweet bites and he always likes to save the best piece (the middle) of the danish for last. I wouldn't classify feeding him breakfast as tedious or drudgery, but some days are harder than others. I'd made a commitment a few months ago to be Anderson's "Proverbs 31 Wife" or P31W. If you're not familiar with it, I encourage you to read it over; I've copied it at the end of this email. I think I'll be working on this commitment all my life. Sometimes I think it's impossible, but while reading about Abigail, Nabal's widow, and one of King David's first wives, I think that, well, if she could do it with an idiot husband, I should be able to do it with my super duper one. Anyway, I digress. So, as I was feeding Anderson this morning, I was reminded that P31W was anything but lazy. She woke up at the crack of dawn to prepare food for her family, which she probably had to do from scratch. I don't even have to do that... I just have to take the cover off the plate, cut it up and put it in his mouth. I don't even have to wake up at dawn. Breakfast comes between 7-8am. What I needed was to wait on the Lord, for Him to renew my strength... so I could run and not grow weary.
The world will tell you to look out for #1... that you NEED this... that you deserve that. Thinking like that... there's no room for love to grow and blossom when you're constantly pushing yourself in front of your partner. It's really funny when he says it, but he sometimes refers to the "God triangle" which is the two of us at the bottom of the triangle, holding hands, focusing upwards to God at the pinacle of the triangle. I always imagined that we were aiming for an equilateral or isosceles triangle here... not scalene. Not a perfect analogy; just bear with me.
Anderson always gives me the best. Right now he needs me to help him, but he always tells me that he'd pamper me if he could, he'd massage me if he could, he'd take me out if he could. He doesn't take for himself unless he's already offered it to me first. While I feed him, he always tells me to eat eat eat. When I do his face mask, he asks me "what about you?". He asked me today... "at what point in our relationship did you know I was the one for you?" I told him that it probably took me a year or two before I felt that he was the one. I asked him the same question and he said it took him a little bit longer to figure it out. I think it took him so much longer to know that I was his "one" because it took me that much longer to learn how to put him first. He has led me by example and has done with his life what no amount of book learning or Sunday School could teach me. God has used him, through who he is and everything that's happened in our lives, to show me what love is. I want to be P31W for him because he is, and has been, all that and more to me... it's the least I can do.
I also asked him what else I could do/give him for his birthday. I already bought him an electric razor, which I gave to him early because he saw me walk in the apt with it and... well... I didn't see the point in hiding it until his birthday. It's been really useful for the hospital. It's been over a month and it still hasn't needed to be recharged yet. Anyway, I thought about getting him mlb.tv so he could at least listen to Dodger games while we're here... he said thanks but no thanks. The best birthday gift, he said, is you here with me. And I know he meant it. Things are useful, but love and sacrifice... they're so much more valuable than objects. And giving him "me"...it doesn't cost anything, it costs everything.
So these are some of my thoughts for today... in the midst of bad news and yet another surgery... I ponder love and sacrifice because that's what my interactions with Anderson have reminded me to do today. Another thing that P31W does is that she makes the most out of what she's given. I need to be P31W, also, to remind Anderson, by my words and more importantly by my example, to make the most out of every thing and every day we're given.
Lots to learn, lots to grow. Thank you for sharing our journey, praying for us, and encouraging us along the way.
<3,
Tiff
She is more precious than rubies.
11 Her husband can trust her,
and she will greatly enrich his life.
12 She brings him good, not harm,
all the days of her life.
Anderson, Anderson's family and I all agree that we're going to proceed with the surgery on Monday. The greater risk would be not to do the surgery and leave his wound open for an eventual infection to develop.
What this means for us is that we'll be going back to MD Anderson just for the surgery and then for a few days of recovery. Best case scenario, we'll spend 24 hours in the ICU, then spend maybe another 48 on the plastic surgery floor and then come back to Kindred. We still have to work out the details with the surgeons and all, but from what we've gathered from our phone calls with the doctors, that's what's going to happen. MD Anderson is currently at capacity so we are waiting for a room to open up and then Anderson will be transferred back by ambulance.
The surgery will involve a skin graft and ... other stuff that I can't recall at the moment. The nurse said she's scheduled the OR for 10 hours and 95% of it will be done by plastic surgery and 5% by neurosurgery.
Chemo is obviously postponed while he recovers from surgery. While he's back at MD Anderson, the neurosurgeon will also order an MRI of his spine to see how he's responded to radiation (and the herbs).
Major concerns going into surgery are that his platelets are still pretty low. He got an infusion, but they are likely to drop low again because there hasn't been enough time for his bone marrow to recover from radiation. They will probably infuse him with lots of platelets. Another concern is his low white blood cell count. Surgery is added stress on the body and immune system. Also, his skin was radiated and will therefore heal VERY slowly. His skin is pretty delicate all along his spine right now and it also puts him at greater risk for bed sores/pressure ulcers.
So... right now our most urgent prayer requests are:
- Strengthening him for surgery - this includes spiritual, mental, emotional and physical strength. I'm praying for the right words to encourage him throughout this process. He's eating well so far. Hope his body responds and pumps up his blood counts.
- Logistics - for a room to open up at MD Anderson. For Kindred and MD Anderson to coordinate his transfer. Good communication between everyone, us included.
- NO infections! No word about blood/urine cultures yet. Results will probably be ready by this weekend.
- Minimize complications of surgery, immobility, hospitalization...
- Quick healing and recovery
- Good rest this weekend
I was thinking about it earlier today and it seems like God's not letting us out of "high alert" mode. I still perk up at every odd noise, I'm watching him and his skin, his foley, his bowels... like a hawk. For the past month or so now... it's been "high alert" and it's mentally and emotionally draining, but it keeps us on our toes and it forces us to keep pressing on and not backslide or grow lazy or complacent. It's like you want to look left or right, but something always snaps you back to the straight and narrow.
This morning was a bit rough too, on top of the news of more surgery. His phlegm was keeping him up and in turn, keeping me up because he kept clearing his throat every few seconds. I'd also have to get up very frequently to get him water or a tissue or a bucket or something. And he always seemed to ask for something right after I got back into bed and pulled on the covers and right when the warmth and weight of the blankets started to invite me in to peaceful slumber, he'd ask for something else and I'd have to force myself to fling open the covers and brave the icy cold hospital air to get him what he needed. It happened at least 5 times before 8am. And then the food came. I really just wanted a tiny break, but he wanted to eat and he didn't want to wait.
Half asleep, I cut apart bite-sized portions of his canadian bacon, danish and scrambled eggs. He likes it when I make him "combos" and put 2 items in his mouth on the same fork. I also alternate salty and sweet bites and he always likes to save the best piece (the middle) of the danish for last. I wouldn't classify feeding him breakfast as tedious or drudgery, but some days are harder than others. I'd made a commitment a few months ago to be Anderson's "Proverbs 31 Wife" or P31W. If you're not familiar with it, I encourage you to read it over; I've copied it at the end of this email. I think I'll be working on this commitment all my life. Sometimes I think it's impossible, but while reading about Abigail, Nabal's widow, and one of King David's first wives, I think that, well, if she could do it with an idiot husband, I should be able to do it with my super duper one. Anyway, I digress. So, as I was feeding Anderson this morning, I was reminded that P31W was anything but lazy. She woke up at the crack of dawn to prepare food for her family, which she probably had to do from scratch. I don't even have to do that... I just have to take the cover off the plate, cut it up and put it in his mouth. I don't even have to wake up at dawn. Breakfast comes between 7-8am. What I needed was to wait on the Lord, for Him to renew my strength... so I could run and not grow weary.
The world will tell you to look out for #1... that you NEED this... that you deserve that. Thinking like that... there's no room for love to grow and blossom when you're constantly pushing yourself in front of your partner. It's really funny when he says it, but he sometimes refers to the "God triangle" which is the two of us at the bottom of the triangle, holding hands, focusing upwards to God at the pinacle of the triangle. I always imagined that we were aiming for an equilateral or isosceles triangle here... not scalene. Not a perfect analogy; just bear with me.
Anderson always gives me the best. Right now he needs me to help him, but he always tells me that he'd pamper me if he could, he'd massage me if he could, he'd take me out if he could. He doesn't take for himself unless he's already offered it to me first. While I feed him, he always tells me to eat eat eat. When I do his face mask, he asks me "what about you?". He asked me today... "at what point in our relationship did you know I was the one for you?" I told him that it probably took me a year or two before I felt that he was the one. I asked him the same question and he said it took him a little bit longer to figure it out. I think it took him so much longer to know that I was his "one" because it took me that much longer to learn how to put him first. He has led me by example and has done with his life what no amount of book learning or Sunday School could teach me. God has used him, through who he is and everything that's happened in our lives, to show me what love is. I want to be P31W for him because he is, and has been, all that and more to me... it's the least I can do.
I also asked him what else I could do/give him for his birthday. I already bought him an electric razor, which I gave to him early because he saw me walk in the apt with it and... well... I didn't see the point in hiding it until his birthday. It's been really useful for the hospital. It's been over a month and it still hasn't needed to be recharged yet. Anyway, I thought about getting him mlb.tv so he could at least listen to Dodger games while we're here... he said thanks but no thanks. The best birthday gift, he said, is you here with me. And I know he meant it. Things are useful, but love and sacrifice... they're so much more valuable than objects. And giving him "me"...it doesn't cost anything, it costs everything.
So these are some of my thoughts for today... in the midst of bad news and yet another surgery... I ponder love and sacrifice because that's what my interactions with Anderson have reminded me to do today. Another thing that P31W does is that she makes the most out of what she's given. I need to be P31W, also, to remind Anderson, by my words and more importantly by my example, to make the most out of every thing and every day we're given.
Lots to learn, lots to grow. Thank you for sharing our journey, praying for us, and encouraging us along the way.
<3,
Tiff
A Wife of Noble Character
10 [b]Who can find a virtuous and capable wife?She is more precious than rubies.
11 Her husband can trust her,
and she will greatly enrich his life.
12 She brings him good, not harm,
all the days of her life.
13 She finds wool and flax
and busily spins it.
14 She is like a merchant’s ship,
bringing her food from afar.
15 She gets up before dawn to prepare breakfast for her household
and plan the day’s work for her servant girls.
16 She goes to inspect a field and buys it;
with her earnings she plants a vineyard.
17 She is energetic and strong,
a hard worker.
18 She makes sure her dealings are profitable;
her lamp burns late into the night.
19 Her hands are busy spinning thread,
her fingers twisting fiber.
20 She extends a helping hand to the poor
and opens her arms to the needy.
21 She has no fear of winter for her household,
for everyone has warm[c] clothes.
22 She makes her own bedspreads.
She dresses in fine linen and purple gowns.
23 Her husband is well known at the city gates,
where he sits with the other civic leaders.
24 She makes belted linen garments
and sashes to sell to the merchants.
25 She is clothed with strength and dignity,
and she laughs without fear of the future.
26 When she speaks, her words are wise,
and she gives instructions with kindness.
27 She carefully watches everything in her household
and suffers nothing from laziness.
28 Her children stand and bless her.
Her husband praises her:
29 “There are many virtuous and capable women in the world,
but you surpass them all!”
30 Charm is deceptive, and beauty does not last;
but a woman who fears the Lord will be greatly praised.
31 Reward her for all she has done.
Let her deeds publicly declare her praise.
Tiffany Chen
Jun 28, 2009, 1:09:45 AM6/28/09
to ipray4anderson
Hi all,
Anderson is 28 years old! :) The day started off a little rocky, but after a few breathing treatments and a good hearty nap, he was awake for an early dinner and was able to see all our guests and even watch me open some of his gifts. He tried opening one on his own but the ribbons were too much to handle.
Thank you all so much! These gifts were more fun to open than our wedding gifts. :P. We really really appreciate all the hard work and thoughtfulness that went into the things you all have sent us. We're truly blessed to have friends and family like you.
I'm super duper tired today so just a quickie.
<3,
Tiff
Anderson is 28 years old! :) The day started off a little rocky, but after a few breathing treatments and a good hearty nap, he was awake for an early dinner and was able to see all our guests and even watch me open some of his gifts. He tried opening one on his own but the ribbons were too much to handle.
Thank you all so much! These gifts were more fun to open than our wedding gifts. :P. We really really appreciate all the hard work and thoughtfulness that went into the things you all have sent us. We're truly blessed to have friends and family like you.
I'm super duper tired today so just a quickie.
- Surgery - still scheduled for Monday. We haven't been moved to MD Anderson yet. I called admissions earlier today and they said we're pretty much good to go for a transfer late afternoon or nighttime. Please continue to pray about the surgery, the surgeons and their skills, his bloodwork, and all the details that seem to have been pushed to the last minute since we haven't been transferred yet. Also continue to pray for our own personal preparations for the surgery. It's not brain surgery, but it's going to be a long one and I hope his body can handle it.
- Phlegm - his breathing treatments seem to work, but only temporarily. He's been better tonight than in the mornings, but please pray for a good night's sleep for him and that the phlegm wouldn't get in the way of his rest. Also pray that his lungs would continue to remain clear.
- Wound - no infection please
- appetite - he hasn't eaten as much today as he normally does. pray that his body would remain strong.
<3,
Tiff
Tiffany Chen
Jun 28, 2009, 1:15:15 PM6/28/09
to ipray4anderson
Hi everyone,
We have a room at MD Anderson and we're going to be transferred there by ambulance at around 1:30-2pm today.
More updates later...
<3,
Tiff
We have a room at MD Anderson and we're going to be transferred there by ambulance at around 1:30-2pm today.
More updates later...
<3,
Tiff
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