Praying and Waiting @ MD Anderson
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Tiffany Chen
Jul 1, 2009, 1:46:34 AM7/1/09
to ipray4anderson
Hi everyone,
Not many updates as far as Anderson goes, but I do have some thoughts I'd like to share and hopefully they'll help you all feel a little more what I feel and what I'm going through right now.
I really don't feel strong at all. When people write me and tell me how strong I am or how strong I've been... I really don't feel worthy to be called that. Any and all strength that you see in me comes directly from God and absolutely none from me. I think if it were completely up to me, I'd just crawl into a corner and wish I would just die there. Every time I get out of bed, every time I sit up and talk to a doctor, every time I do anything at all, it's God lifting me up and moving me. I have no strength left. I can barely function. I'm glad he's in the ICU now because I really do not have the mental capacity to take care of him right now.
I wanted to share with you a little bit from the book I've been reading.. Hope for Hurting Hearts. The way Greg Laurie writes the book reminds me of the way I write these emails. I like it. He seriously puts my emotions into words better than I could on my own. Here's from the section "what helps... and what doesn't". He even uses "..." like I do!
Sometimes people will see you in the days of grieving, and they will notice that you're not smiling, or even that you've been crying. And they'll think, perhaps, that you're not doing very well.
Well, what were you expecting? There is a place for mourning, a place for weeping, a place for grieving when someone you love has died. So don't expect us to get over it quickly. You can't "get over" someone who has been a part of your life... You don't just edit them out of the script. Yes, you know they're alive in heaven, but they're not with you anymore. And that is where the sorrow comes in...
Grief is like a big ocean wave... When you're out there in the ocean waiting for a wave and see a really big one coming, you have to make a choice. You have to decide what you will do with that wave. If you don't take action to ride the wave, it can pick you up and slam you down into what we used to call the soup, or the whitewater. And when you're in that turbulent, angry water, you can quickly lose perspective, even losing the sense of "which way's up?" The other way to handle a large wave is to catch it, and ride it as best you can.
Sometimes you will encounter a grieving person who has managed to ride the waves for a while, and he's keeping his head above water. Then at other times, you will see him when he's been caught in the wave, crushed by its force, and seemingly lost all perspective.
So when you ask a grieving person "how are you?, he or she may find that difficult to answer. Maybe it would be better to simply say, "I'm praying for you," "I'm sorry," or "I love you."
Sometimes a person may want to talk about their grief. At other times, it's the last thing they want to do. And sometimes the best thing youc an do for someone who has lost someone is not to say anything at all. Job's counselors had it right when they first came to see him and console him. For seven full days these friends didn't say a word, they simply sat with him in his grief. Everything began to fall apart when they started talking.
When you're mourning, you're vulnerable. Your guard is down and you are ultra sensitive-sensitive to things that will help you and sensitive to things that can hurt you as well. So if youw ant to say something to a grieving person, pray that the Lord will give you the right words. And if you don't know what the right words are, just give that person a smile and don't speak at all. Just say a prayer for them and leave them alone. (It's me now... I don't mean to say that you all should leave us or me alone. He goes into a section right after this about words that don't help, like "I know what you're feeling" or "what doesn't kill you only makes you stronger" or "God always picks His best flowers first" I'll skip a little bit and get to another part that I thought was really true)...
One person who lost three members of their family in a tragic car crash wrote, "We recover from broken limbs, not amputations. Catastrophic loss by definition precludes recovery. It will transform us or destroy us, but it will never leave us the same. There is no going back to the past, which is gone forever; only going ahead to the future, which is yet to be discovered." [end of excerpt]
I think that one of the most beautiful things about having a relationship with God is the hope that He brings in our lives. The saying that "time heals all wounds"... I don't necessarily agree with that. I think that time will help you forget the sting, but the wound is always there. It's a sensitive spot that when poked or prodded by some unsuspecting passerby, opens up again and pours out blood or pus if it's a particularly nasty wound. If you ever've said "where'd that come from?" when someone reacted particularly nastily or harshly to your seemingly harmless action or remark... you might have just poked open someone's pre-existing emotional wound... just maybe. To be truly healed and whole again is impossible... on our own. Only the Creator can restore the broken; broken doesn't just up and fix itself. True healing is born out of hope and to me, God is the only source of hope in this world.
The more you try to control your life, the more you try to hang on to what you think you deserve, the more difficult life becomes. Disappointment and loss is inevitable. Hope comes from knowing that God has a plan and that it's not an evil one, but it's a beautiful one... one that glorifies Him in all His goodness and power and love for us and THAT seriously gives me hope. It's so counter-intuitive, but the more you give up control to God, the easier life becomes and the more you have to gain. The unbearable becomes bearable. If you're sinking sinking sinking deeper and deeper into the dark depths of the ocean with some kind of heavy weight tied to you, immobilizing your legs, pulling you lower and deeper, the weight of the water closing in on you and the panic of drowning and suffocation causing you to flail about in futile efforts to grasp what you see but cannot attain... giving up control and submitting to God is like being loosed from the weight, floating effortlessly up to the surface and taking huge gasps of life-giving air until you've been restored and can breathe normally again. Even death... death may seem like the ultimate roadblock in the journey of life... but it really isn't. Life in this world is just a glimmer... a foggy reflection of eternal life and heaven. Death is just the end of this foggy life and the beginning of something more wonderful and glorious than we could ever imagine. That is something to look forward to.
Something that I've been thanking God for through all of this is how He's used all the circumstances in our lives to prepare us for this moment of probable separation. Anderson and I had a long distance relationship for about 3 years prior to his first brain tumor diagnosis in 2006. He'd spend 3 months in Brazil and one month in the U.S. Once he bought his plan ticket to go back to Brazil, we knew we only had limited days left together... it all became a countdown until the moment he had to make that long drive out to LAX. For the first year of our relationship, I was a wreck every single time. Sometimes I'd just want to sleep through the departure... so I wouldn't feel the sting of separation... but that was kind of dumb because I still felt it later on and I could have been awake to say goodbye one last time while he was still there to hug and comfort me. One time, I was so depressed that I kinda locked myself in my room for a month and did nothing but listen to the audio version of Harry Potter. I think I might have listened to the first 3 or 4 books while I just laid there in bed. After a few times... we were still sad and we still cried every time, but it didn't break me every time... it just became another countdown... this time not for how much time we had left together, but for how much time until we'd see each other again. Anderson had a countdown timer on his desktop and he numbered the days until he'd be back with me again. It really changed the time we were apart when we focused not on our present sadness, but focused on the upcoming reunion instead. God's promised me an eternity with Anderson in heaven. That's definitely something to look fwd to. This time, I have no idea how long my countdown timer is, but I'm sure I'll end up at the end of my life wondering where all that time went and be bursting with joy when I can wake up and take that journey to meet him in the clouds.
That being said, I am still praying with all my heart for a miracle. Faith the size of a mustard seed can throw a mountain into the ocean, so says Jesus. I have full confidence that God can stop tumor progression, regenerate healthy tissue, make him see again, make him walk again, make him breathe again... in the blink of an eye. He has that power and I believe it. But I also believe that God will choose the path that gives Him the most glory. Maybe I think that a miraculous healing would bring Him more glory but who am I to make that call? I wasn't there when He created the world and everything in it. I have absolutely no authority to make that call... and my desire for miraculous healing would probably come out of my own selfishness to keep him for myself a little bit longer than anything else.
I see this is becoming one of the long ones. I guess I'll try to wrap things up now.
Last thought of the email: One of the sad things about the ICU is that they kick me out for 4 hours a day... 2 hours during the change in morning shift and 2 hours during the change at night. When they kicked us out of his room for the night shift change, I went home to the apt with Kelly and took a shower. I had been feeling OK until I stepped into the bathroom. I suddenly became overwhelmed with emotion from the memories we spent in that bathroom... in that bedroom. Getting ready in the mornings and brushing up at night were pretty big ordeals for me and Anderson. Whoever got there first would put toothpaste on the other person's toothbrush for the other person. Was that confusing? Anyway, sometimes I'd get there and there'd be toothpaste waiting for me on my toothbrush usually at night. It would warm my heart every time. The master bathroom at the apt also had two sinks and we really enjoyed standing side by side and getting ready together. Anyway, it all hit me and I suddenly felt really alone. I'd cry and stop. Sob and then stop. When we finally got back to the hospital, I held his hand and he squeezed mine back. I started crying and he wanted to be let out of his wrist restraint (they restrain him so he doesn't pull out his breathing tube) so I let loose one of his hands and he pulled me close to him and he started patting my arm and consoling me. He still takes care of me with what he can. I'm so blessed to be married to the man of my dreams... who would still desire to take care of me even while on a ventilator, a feeding tube, an EKG, a central line, 2 periph IV's and an arterial line, paralyzed from the chest down... to comfort me with one arm while the other one is still in a wrist restraint. This is the love I want to remember... not getting a dozen roses on valentine's day, even though he does that too sometimes.
Take home message: God is the source of our strength, our hope, our faith, and our love. If you couldn't already tell by my super long emails, we really can't stop telling you of all the wonderful things that God's given us and has shown us in our lives. If this is something you desire for yourselves... it really can be yours for 10 easy payments of... (ok JK... I just heard Billy Mays died and infomercials, Pitch Men and oxyclean have been way in the back of my mind today)... No seriously now... if you confess with your mouth that Jesus is Lord and believe in your heart that God raised Him from the dead, you will be saved... BUT WAIT! if you act now, you will inherit all the strength, hope, faith, and love that God has been waiting to offer you your entire life. It would make us so happy if through our lives, that you would come to know God, that through our experiences, you would strengthen your own faith and relationship with Him or even just to not take your life for granted.
K... that's it for today and maybe for a few days unless I have lots more thoughts tomorrow to share.
<3,
Tiff
Pictures:
Not many updates as far as Anderson goes, but I do have some thoughts I'd like to share and hopefully they'll help you all feel a little more what I feel and what I'm going through right now.
I really don't feel strong at all. When people write me and tell me how strong I am or how strong I've been... I really don't feel worthy to be called that. Any and all strength that you see in me comes directly from God and absolutely none from me. I think if it were completely up to me, I'd just crawl into a corner and wish I would just die there. Every time I get out of bed, every time I sit up and talk to a doctor, every time I do anything at all, it's God lifting me up and moving me. I have no strength left. I can barely function. I'm glad he's in the ICU now because I really do not have the mental capacity to take care of him right now.
I wanted to share with you a little bit from the book I've been reading.. Hope for Hurting Hearts. The way Greg Laurie writes the book reminds me of the way I write these emails. I like it. He seriously puts my emotions into words better than I could on my own. Here's from the section "what helps... and what doesn't". He even uses "..." like I do!
Sometimes people will see you in the days of grieving, and they will notice that you're not smiling, or even that you've been crying. And they'll think, perhaps, that you're not doing very well.
Well, what were you expecting? There is a place for mourning, a place for weeping, a place for grieving when someone you love has died. So don't expect us to get over it quickly. You can't "get over" someone who has been a part of your life... You don't just edit them out of the script. Yes, you know they're alive in heaven, but they're not with you anymore. And that is where the sorrow comes in...
Grief is like a big ocean wave... When you're out there in the ocean waiting for a wave and see a really big one coming, you have to make a choice. You have to decide what you will do with that wave. If you don't take action to ride the wave, it can pick you up and slam you down into what we used to call the soup, or the whitewater. And when you're in that turbulent, angry water, you can quickly lose perspective, even losing the sense of "which way's up?" The other way to handle a large wave is to catch it, and ride it as best you can.
Sometimes you will encounter a grieving person who has managed to ride the waves for a while, and he's keeping his head above water. Then at other times, you will see him when he's been caught in the wave, crushed by its force, and seemingly lost all perspective.
So when you ask a grieving person "how are you?, he or she may find that difficult to answer. Maybe it would be better to simply say, "I'm praying for you," "I'm sorry," or "I love you."
Sometimes a person may want to talk about their grief. At other times, it's the last thing they want to do. And sometimes the best thing youc an do for someone who has lost someone is not to say anything at all. Job's counselors had it right when they first came to see him and console him. For seven full days these friends didn't say a word, they simply sat with him in his grief. Everything began to fall apart when they started talking.
When you're mourning, you're vulnerable. Your guard is down and you are ultra sensitive-sensitive to things that will help you and sensitive to things that can hurt you as well. So if youw ant to say something to a grieving person, pray that the Lord will give you the right words. And if you don't know what the right words are, just give that person a smile and don't speak at all. Just say a prayer for them and leave them alone. (It's me now... I don't mean to say that you all should leave us or me alone. He goes into a section right after this about words that don't help, like "I know what you're feeling" or "what doesn't kill you only makes you stronger" or "God always picks His best flowers first" I'll skip a little bit and get to another part that I thought was really true)...
One person who lost three members of their family in a tragic car crash wrote, "We recover from broken limbs, not amputations. Catastrophic loss by definition precludes recovery. It will transform us or destroy us, but it will never leave us the same. There is no going back to the past, which is gone forever; only going ahead to the future, which is yet to be discovered." [end of excerpt]
I think that one of the most beautiful things about having a relationship with God is the hope that He brings in our lives. The saying that "time heals all wounds"... I don't necessarily agree with that. I think that time will help you forget the sting, but the wound is always there. It's a sensitive spot that when poked or prodded by some unsuspecting passerby, opens up again and pours out blood or pus if it's a particularly nasty wound. If you ever've said "where'd that come from?" when someone reacted particularly nastily or harshly to your seemingly harmless action or remark... you might have just poked open someone's pre-existing emotional wound... just maybe. To be truly healed and whole again is impossible... on our own. Only the Creator can restore the broken; broken doesn't just up and fix itself. True healing is born out of hope and to me, God is the only source of hope in this world.
The more you try to control your life, the more you try to hang on to what you think you deserve, the more difficult life becomes. Disappointment and loss is inevitable. Hope comes from knowing that God has a plan and that it's not an evil one, but it's a beautiful one... one that glorifies Him in all His goodness and power and love for us and THAT seriously gives me hope. It's so counter-intuitive, but the more you give up control to God, the easier life becomes and the more you have to gain. The unbearable becomes bearable. If you're sinking sinking sinking deeper and deeper into the dark depths of the ocean with some kind of heavy weight tied to you, immobilizing your legs, pulling you lower and deeper, the weight of the water closing in on you and the panic of drowning and suffocation causing you to flail about in futile efforts to grasp what you see but cannot attain... giving up control and submitting to God is like being loosed from the weight, floating effortlessly up to the surface and taking huge gasps of life-giving air until you've been restored and can breathe normally again. Even death... death may seem like the ultimate roadblock in the journey of life... but it really isn't. Life in this world is just a glimmer... a foggy reflection of eternal life and heaven. Death is just the end of this foggy life and the beginning of something more wonderful and glorious than we could ever imagine. That is something to look forward to.
Something that I've been thanking God for through all of this is how He's used all the circumstances in our lives to prepare us for this moment of probable separation. Anderson and I had a long distance relationship for about 3 years prior to his first brain tumor diagnosis in 2006. He'd spend 3 months in Brazil and one month in the U.S. Once he bought his plan ticket to go back to Brazil, we knew we only had limited days left together... it all became a countdown until the moment he had to make that long drive out to LAX. For the first year of our relationship, I was a wreck every single time. Sometimes I'd just want to sleep through the departure... so I wouldn't feel the sting of separation... but that was kind of dumb because I still felt it later on and I could have been awake to say goodbye one last time while he was still there to hug and comfort me. One time, I was so depressed that I kinda locked myself in my room for a month and did nothing but listen to the audio version of Harry Potter. I think I might have listened to the first 3 or 4 books while I just laid there in bed. After a few times... we were still sad and we still cried every time, but it didn't break me every time... it just became another countdown... this time not for how much time we had left together, but for how much time until we'd see each other again. Anderson had a countdown timer on his desktop and he numbered the days until he'd be back with me again. It really changed the time we were apart when we focused not on our present sadness, but focused on the upcoming reunion instead. God's promised me an eternity with Anderson in heaven. That's definitely something to look fwd to. This time, I have no idea how long my countdown timer is, but I'm sure I'll end up at the end of my life wondering where all that time went and be bursting with joy when I can wake up and take that journey to meet him in the clouds.
That being said, I am still praying with all my heart for a miracle. Faith the size of a mustard seed can throw a mountain into the ocean, so says Jesus. I have full confidence that God can stop tumor progression, regenerate healthy tissue, make him see again, make him walk again, make him breathe again... in the blink of an eye. He has that power and I believe it. But I also believe that God will choose the path that gives Him the most glory. Maybe I think that a miraculous healing would bring Him more glory but who am I to make that call? I wasn't there when He created the world and everything in it. I have absolutely no authority to make that call... and my desire for miraculous healing would probably come out of my own selfishness to keep him for myself a little bit longer than anything else.
I see this is becoming one of the long ones. I guess I'll try to wrap things up now.
Last thought of the email: One of the sad things about the ICU is that they kick me out for 4 hours a day... 2 hours during the change in morning shift and 2 hours during the change at night. When they kicked us out of his room for the night shift change, I went home to the apt with Kelly and took a shower. I had been feeling OK until I stepped into the bathroom. I suddenly became overwhelmed with emotion from the memories we spent in that bathroom... in that bedroom. Getting ready in the mornings and brushing up at night were pretty big ordeals for me and Anderson. Whoever got there first would put toothpaste on the other person's toothbrush for the other person. Was that confusing? Anyway, sometimes I'd get there and there'd be toothpaste waiting for me on my toothbrush usually at night. It would warm my heart every time. The master bathroom at the apt also had two sinks and we really enjoyed standing side by side and getting ready together. Anyway, it all hit me and I suddenly felt really alone. I'd cry and stop. Sob and then stop. When we finally got back to the hospital, I held his hand and he squeezed mine back. I started crying and he wanted to be let out of his wrist restraint (they restrain him so he doesn't pull out his breathing tube) so I let loose one of his hands and he pulled me close to him and he started patting my arm and consoling me. He still takes care of me with what he can. I'm so blessed to be married to the man of my dreams... who would still desire to take care of me even while on a ventilator, a feeding tube, an EKG, a central line, 2 periph IV's and an arterial line, paralyzed from the chest down... to comfort me with one arm while the other one is still in a wrist restraint. This is the love I want to remember... not getting a dozen roses on valentine's day, even though he does that too sometimes.
Take home message: God is the source of our strength, our hope, our faith, and our love. If you couldn't already tell by my super long emails, we really can't stop telling you of all the wonderful things that God's given us and has shown us in our lives. If this is something you desire for yourselves... it really can be yours for 10 easy payments of... (ok JK... I just heard Billy Mays died and infomercials, Pitch Men and oxyclean have been way in the back of my mind today)... No seriously now... if you confess with your mouth that Jesus is Lord and believe in your heart that God raised Him from the dead, you will be saved... BUT WAIT! if you act now, you will inherit all the strength, hope, faith, and love that God has been waiting to offer you your entire life. It would make us so happy if through our lives, that you would come to know God, that through our experiences, you would strengthen your own faith and relationship with Him or even just to not take your life for granted.
K... that's it for today and maybe for a few days unless I have lots more thoughts tomorrow to share.
<3,
Tiff
Pictures:
- The wedding pic is one that May sent me fairly recently. I really like it. I wasn't there when it happened (I think) so it's like I discovered something new about our wedding when I saw this pic. It's on my desktop and sometimes I just like to stare at it. And then I catch myself and realize that the real thing is only a few feet away.
- Dodger Stadium tour - thank you to James and Becky for taking us. It was THE best. :) One of the first things we did after getting married. If you ddin't already know, my husband's a huge dodger fan. I thought he was kind of weird for being so into bowling and baseball but that's OK because those were two of the sports that my dad used to play with us when we were young so I took to it pretty well when he re-exposed them to me after we met. I didn't start to get better at bowling until he became my personal bowling coach. He always took the opportunity to make me a better person. Anyway, I check the standings and the scores everyday now in case he asks me or in case he was wondering. Go Dodgers!
Tiffany Chen
Jul 2, 2009, 4:13:38 PM7/2/09
to ipray4anderson
Hi everyone,
sorry I didn't send out an update yesterday. I was so tired. I'm still tired.
He had an MRI last night and today the doctors are all collaborating to figure out what's the best plan for him right now. They told us they'd come sometime this afternoon after they all communicated with each other.
please be in prayer about their collaboration... for wisdom for them and wisdom for us as we make the decisions.
Anderson's been really frustrated. It's good that he'd been awake and alert, but he can't talk to us because of the breathing tube. They tried to extubate him today, but he wasn't able to breathe deeply enough on his own and his chest xray showed that his lungs are getting worse.
K, I told him that I'd only write a quick one so I'm ending it here.
Please continue to pray for us. Thank you so much for your support and love..
<3,
Tiff
sorry I didn't send out an update yesterday. I was so tired. I'm still tired.
He had an MRI last night and today the doctors are all collaborating to figure out what's the best plan for him right now. They told us they'd come sometime this afternoon after they all communicated with each other.
please be in prayer about their collaboration... for wisdom for them and wisdom for us as we make the decisions.
Anderson's been really frustrated. It's good that he'd been awake and alert, but he can't talk to us because of the breathing tube. They tried to extubate him today, but he wasn't able to breathe deeply enough on his own and his chest xray showed that his lungs are getting worse.
K, I told him that I'd only write a quick one so I'm ending it here.
Please continue to pray for us. Thank you so much for your support and love..
<3,
Tiff
Tiffany Chen
Jul 2, 2009, 10:58:08 PM7/2/09
to ipray4anderson
Hi all,
So the doctors talked it over after looking at Anderson's MRI and they
all said that his cerebellar tumor was inoperable. It's not a
surprise, but still sad. Every single time, I keep hoping that they'll
come back and say "wow, it's all gone!". Every single time, I keep
hoping... and he's gotten a lot of MRIs over the years.
So they gave us a few choices... one is obviously to do nothing. He
has an open wound and a ventriculostomy... both of which will
eventually get infected. The other option is to do surgery to do a
ventriculo-peritoneal shunt and to close the wound. We know he doesn't
like surgery and he's really tired of everything, but he said that he
would do the surgery for us. So... we're waiting for the
neurosurgeons to talk to the plastic surgeons to see if they could get
both the surgeries done in one shot so he wouldn't have to do two
general anesthesias. If everything's a go for the surgeries, they
told us to plan for Tuesday.
The lungs... he does have some pneumonia. They tried to take out the
tube today, but he wasn't strong enough to pass their tests... so
they're going to try again tomorrow. They also increased his
antibiotics to hopefully get rid of his pneumonia. Sputum cultures
still pending.
We did figure out a way for him to communicate a little bit. I wrote
the alphabet on a piece of paper and he's been spelling out some
words. Sometimes it's still frustrating, but we were able to get some
sentences together. Yay. :)
And I sang to him a little bit. I'd like to think that it helped him
fall asleep. I'll ask him later when he's more awake.
K... better go now...
<3,
Tiff
On 7/2/09, Tiffany Chen <tiffan...@gmail.com> wrote:
> Hi everyone,
>
> sorry I didn't send out an update yesterday. I was so tired. I'm still
> tired.
>
> He had an MRI last night and today the doctors are all collaborating to
> figure out what's the best plan for him right now. They told us they'd
> come
> sometime this afternoon after they all communicated with each other.
>
> please be in prayer about their collaboration... for wisdom for them and
> wisdom for us as we make the decisions.
>
> Anderson's been really frustrated. It's good that he'd been awake and
> alert, but he can't talk to us because of the breathing tube. They tried
> to
> extubate him today, but he wasn't able to breathe deeply enough on his own
> and his chest xray showed that his lungs are getting worse.
>
> K, I told him that I'd only write a quick one so I'm ending it here.
>
> Please continue to pray for us. Thank you so much for your support and
> love..
>
> <3,
> Tiff
>
>
> On Wed, Jul 1, 2009 at 12:46 AM, Tiffany Chen
> <tiffan...@gmail.com>wrote:
>
>> Hi everyone,
>>
>> Not many updates as far as Anderson goes, but I do have some thoughts I'd
>> like to share and hopefully they'll help you all feel a little more what
>> I
>> feel and what I'm going through right now.
>>
>> I really don't feel *strong *at all. When people write me and tell me
>> - The wedding pic is one that May sent me fairly recently. I really
>> like it. I wasn't there when it happened (I think) so it's like I
>> discovered
>> something new about our wedding when I saw this pic. It's on my
>> desktop and
>> sometimes I just like to stare at it. And then I catch myself and
>> realize
>> that the real thing is only a few feet away.
>> - Dodger Stadium tour - thank you to James and Becky for taking us.
Tiffany Chen
Jul 4, 2009, 2:15:33 AM7/4/09
to ipray4anderson
Hi everyone,
The plastic surgeon came by today to explain everything. It seems like everything's a go for surgery on Tuesday as long as he's still stable enough to do it. They told me that they do a lot of these types of procedures and that it's pretty common.
He had a rough morning today... low blood pressure, high heart rate...alarms going off left and right, but everything got settled by the afternoon and he was able to do another hour-long trial of breathing on his own. He did really well with that, but respiratory was so busy today that they barely came around so he didn't get to do the other tests today. Hopefully tomorrow. And then hopefully he can get extubated, then get the speech pathologist to come evaluate his swallowing and then progress from the liquid diet to solids and then he can have his favorite bread pudding from M.D. Anderson.
I'm thankful that we have a really good night nurse tonight. She got everything done, clean, straightened out and ready so now he can hopefully sleep. I'd definitely learn a lot from her if I was precepting with her. I've learned lots of good tidbits about being a better nurse just from watching and listening to her. Good times. I was also a lot more awake today during the day and the day nurse was nice... I was able to help do his oral care and give him his bath and do his passive range of motion exercises for his legs. I felt better being able to take care of him a little bit.
Prayer requests
Oh... I've still been getting a lot of requests from people to add them to the google group. I was almost certain that anyone could add themselves, but I guess it's not as easy as I originally thought, especially if you don't have a google account already. Here's the easiest way, i think... someone can correct me if I'm wrong... just send an email from your personal email address to "ipray4anderson+subs...@googlegroups.com" and it should add you to the google group. Please pass these instructions along to anyone who's not yet in the group but wants to be. Thanks!
night everyone...
<3,
Tiff
The plastic surgeon came by today to explain everything. It seems like everything's a go for surgery on Tuesday as long as he's still stable enough to do it. They told me that they do a lot of these types of procedures and that it's pretty common.
He had a rough morning today... low blood pressure, high heart rate...alarms going off left and right, but everything got settled by the afternoon and he was able to do another hour-long trial of breathing on his own. He did really well with that, but respiratory was so busy today that they barely came around so he didn't get to do the other tests today. Hopefully tomorrow. And then hopefully he can get extubated, then get the speech pathologist to come evaluate his swallowing and then progress from the liquid diet to solids and then he can have his favorite bread pudding from M.D. Anderson.
I'm thankful that we have a really good night nurse tonight. She got everything done, clean, straightened out and ready so now he can hopefully sleep. I'd definitely learn a lot from her if I was precepting with her. I've learned lots of good tidbits about being a better nurse just from watching and listening to her. Good times. I was also a lot more awake today during the day and the day nurse was nice... I was able to help do his oral care and give him his bath and do his passive range of motion exercises for his legs. I felt better being able to take care of him a little bit.
Prayer requests
- Lungs - continue to pray that they'll be strengthened so that they can wean him off the breathing tube. Also pray that the antibiotics and breathing treatments would work to help clear out his lungs. Seems like the infection control doctors are going crazy with the antibiotics trying to get rid of his pneumonia.
- Heart rate and blood pressure - he seems to be doing well on a pretty low dose of norepi. Once they take him completely off, he tends to drop pretty low. Pray that he'll be OK. I think that some of these problems are caused by the tumor infiltrating his brain stem which is the control center for all the breathing, heart rate, blood pressure and that kind of thing. I think that only a miracle can help for this one.. but finding the right combo and dosage of drugs is helping in the meantime.
- Neck shaking - his neck's been shaking a lot today. It's really irritating to him and we can't seem to get it to stop. Pray that he gets some rest from it.
- Rest - pray that he gets some. It's really hard to sleep in the ICU.
- Communication - I think we have somewhat of a system figured out but it's still frustrating for him to communicate. I wrote out the alphabet on a paper and he points to the letters and I sound them out as he goes... I also have to try to figure it out as he goes too. One time he asked me if I was going to say everything he wrote and I said "yes" so he spelled out "I am a hot pink flower". I told him he was silly and then he spelled out "I still got it." :)
- Peace - pray for peace for him. He has a lot of uncertainties and questions inside, I'm sure, but he only gets a few out once in a while. One of his biggest concerns is when can he eat again. He asks almost all the doctors when can he eat again. I have to tell him over and over again that he can eat if he can get the breathing tube out and if he can swallow safely. Food's been pretty important lately. It's one of the simple pleasures that he could still enjoy since he can't move his legs anymore. Food, smells, face masks and massages. He can't eat or smell anything now because of the breathing tube and ventilator and well... the breathing tube and feeding tube kind of get in the way of a face mask so all he gets are massages nowadays.
- The night nurse told me that the lady next door will be leaving as soon as she gets a room on the floor. She told me that the room next door would probably work out better for Anderson because it doesn't have a window that lets in a lot of light. It's not a huge HUGE deal, but it would be nice to be in the room next door. Pray that maybe we can switch sometime soon and that it would help him be more comfortable.
Oh... I've still been getting a lot of requests from people to add them to the google group. I was almost certain that anyone could add themselves, but I guess it's not as easy as I originally thought, especially if you don't have a google account already. Here's the easiest way, i think... someone can correct me if I'm wrong... just send an email from your personal email address to "ipray4anderson+subs...@googlegroups.com" and it should add you to the google group. Please pass these instructions along to anyone who's not yet in the group but wants to be. Thanks!
night everyone...
<3,
Tiff
Tiffany Chen
Jul 4, 2009, 2:52:08 PM7/4/09
to ipray4anderson
Hi all!
HAPPY INDEPENDENCE DAY!
Anderson's celebrating his own little independence... from the
ventilator! He was extubated this morning at 10am and he's doing
really well. They told us his chest xray looks better this morning.
He's chatting it up and asking about soccer scores and how the dodgers
are doing. He's also been asking when he can eat, but it's a weekend
and speech pathology doesn't work on weekends so earliest would be
Monday. :(
We praise God that he's breathing on his own and that his chest xray
is clearing up. Please continue to pray that they both continue to
get better. It's our little victory today. :)
Pray that he continues to grow stronger as he's going into surgery
this coming Tuesday.
Keep praying with us!
<3,
Tiff
If you would like to join this google group, send an email to
"ipray4anders...@googlegroups.com" and it should add you to
Tiffany Chen
Jul 5, 2009, 4:36:22 AM7/5/09
to ipray4anderson
Hi friends,
I was having a chat with my husband tonight. I realized that I write so much because it's hard for me to verbalize what I'm feeling. It's like I can hear the thoughts going through my head but my voice has a hard time getting the words to come out. I'm really glad that I could speak my feelings to Anderson tonight and that he could speak back to me. In an earlier update, I wrote that I just really longed to hear his voice again and today I can. I'm so thankful to God for that!
Part of what I was thinking about tonight was... whether or not God has blessed us so much because He knew that we wouldn't have that much time together. Or if God had put some choices in front of me... would I have chosen a life of excruciating pain with miraculous blessings and beautiful sacrificial love, or a simple life where the pendulum doesn't swing quite so high in either direction. It's hard to imagine going back to a time where I haven't experienced God's miraculous power or the oneness I experience with Anderson. But then, if I'd never experienced it, would I even know what I was missing? Would I have been content to live only reading or hearing about the kinds of things that happen to other people? I don't know. I do know that the Words of God have truly come alive to me during times of suffering. They pierce, they encourage, they convict, they remind me of God, His goodness, His promises, and most of all, the hope I have in Him.
Another thought: Do you remember that quote I put at the end of one of my emails... about not forgetting in the dark what God told you in the light? Sometimes I think it also goes both ways... don't forget in the light what God told you in the dark. God's voice is often loudest when we're crying out to Him and when we're desperately waiting for His answer... so when He does answer... can't forget to go back and give Him praise and thanks for everything He's done. Like when Jesus healed those 10 lepers and only 1 came back to thank Him. How quickly we tend to forget after we get what we want. I hope and pray that we would not be like those 9 guys if God chooses to bless us with a miracle of healing.
So I wrote the paragraphs above a little while ago. Never a dull moment.
Just now, Anderson went into respiratory distress. They put him on bipap to give him some extra pressure on his breaths. It's been working so far but he's not in the greatest shape. They might have to intubate again. :(
Please pray.
<3,
Tiff
I was having a chat with my husband tonight. I realized that I write so much because it's hard for me to verbalize what I'm feeling. It's like I can hear the thoughts going through my head but my voice has a hard time getting the words to come out. I'm really glad that I could speak my feelings to Anderson tonight and that he could speak back to me. In an earlier update, I wrote that I just really longed to hear his voice again and today I can. I'm so thankful to God for that!
Part of what I was thinking about tonight was... whether or not God has blessed us so much because He knew that we wouldn't have that much time together. Or if God had put some choices in front of me... would I have chosen a life of excruciating pain with miraculous blessings and beautiful sacrificial love, or a simple life where the pendulum doesn't swing quite so high in either direction. It's hard to imagine going back to a time where I haven't experienced God's miraculous power or the oneness I experience with Anderson. But then, if I'd never experienced it, would I even know what I was missing? Would I have been content to live only reading or hearing about the kinds of things that happen to other people? I don't know. I do know that the Words of God have truly come alive to me during times of suffering. They pierce, they encourage, they convict, they remind me of God, His goodness, His promises, and most of all, the hope I have in Him.
Another thought: Do you remember that quote I put at the end of one of my emails... about not forgetting in the dark what God told you in the light? Sometimes I think it also goes both ways... don't forget in the light what God told you in the dark. God's voice is often loudest when we're crying out to Him and when we're desperately waiting for His answer... so when He does answer... can't forget to go back and give Him praise and thanks for everything He's done. Like when Jesus healed those 10 lepers and only 1 came back to thank Him. How quickly we tend to forget after we get what we want. I hope and pray that we would not be like those 9 guys if God chooses to bless us with a miracle of healing.
So I wrote the paragraphs above a little while ago. Never a dull moment.
Just now, Anderson went into respiratory distress. They put him on bipap to give him some extra pressure on his breaths. It's been working so far but he's not in the greatest shape. They might have to intubate again. :(
Please pray.
<3,
Tiff
Tiffany Chen
Jul 5, 2009, 5:59:58 AM7/5/09
to ipray4anderson
Update: Since he's been on bipap, he's been doing MUCH better. They did a chest xray and he's got atelectasis in his right lung. The pressure is helping for now. They plan to do a CT when he's more stable and may do a bronchoscopy in the morning. The neurosurgeons felt that he should be intubated for his own safety... so he's intubated now... again. :( I did get to hear his voice though. I'm glad. Hopefully... the tube will be out again soon.
I'm hoping that both of us will be able to get a little rest now. He's on a versed drip so hopefully he's getting some rest. Does sedated = sleep? I dunno. I'm tired.
more updates later...
<3,
Tiff
I'm hoping that both of us will be able to get a little rest now. He's on a versed drip so hopefully he's getting some rest. Does sedated = sleep? I dunno. I'm tired.
more updates later...
<3,
Tiff
Tiffany Chen
Jul 6, 2009, 1:05:36 AM7/6/09
to ipray4anderson
Hey all,
So last night was a pretty rough one. Just as a recap, around 3am, he went into respiratory distress, they put him on the bipap mask and eventually decided to intubate him after they saw that his right lung had collapsed. He was doing fine on the ventilator through the rest of the early morning and around 8:30am, they did the bronchoscopy. I was SO exhausted that I wanted to just sleep through it... but my curiosity got the better of me and I had to get up and watch. They put a little camera down his tube, into his lungs and sucked out a whole lot of mucous. The doctor was able to help clear out the upper lobe of his right lung (the scope couldn't go that far down) and through some internal chest percussion and breathing treatments and suctioning, he's been breathing much better today. His chest expansion is almost equal. There's something so gratifying about suctioning. I love trach suctioning. Yes, it's kind of gross (especially when they've got a nasty infection with nasty smelling bacteria), but that sound of getting the nasty stuff out and watching their oxygen saturation climb back up... oh man. I love it. Should I have been a respiratory therapist? I dunno. I think I'm good with being a nurse. My husband... I never thought he'd help me with my education/career more than being a test subject for my physical assessment practicums, but he's been my one man review of nursing school.
That being said, I go back and forth between approaching him as a patient and approaching him as my husband. Sometimes it's easier to talk to him like a patient... more like talking at him tho...because when I start seeing him as my husband in the bed, my heart starts to break. I've taken care of patients on ventilators... patients who couldn't move... sedated patients... and sometimes it's just a job. I talk like I have a lot of experience.. but not really... just what I learned in nursing school and my clinical rotations. In fact, I used to get really excited that I'd get to see a code blue (respiratory emergency). It's totally different when it's your husband they're doing the emergency intubation on and not someone you're just going to take care of for one day and possibly never see again. Anderson is truly my better half. He's always finding ways to break into, crack open, sneak into my heart and open it up. Even though he isn't even trying to, he's helping me be a better person and a better nurse. Even in the one day that he was extubated, he told me that I need to talk nicer to people. He never lets me get away with anything. Even yawning with my mouth uncovered. This morning, he saw me yawn and he covered my mouth for me. Yep. That's my husband. I love him.
Today was rough though. I barely got any sleep and he kept trying to talk and tell me things and I wasn't understanding. I tried so hard to understand. I wanted so badly to hear what he wanted to tell me. I got more frustrated and more frustrated until I broke down in tears. I sobbed on my mom for a while. Then Anderson just held my head in his hands and patted my head and shoulders and mouthed that "it's going to be OK". I told him the other day that I couldn't have done this without him... even though he's the reason we're here in the ICU, but I really couldn't have done this with anyone else.
Other than the morning shenanigans and communication issues, the day has been fairly stable. He did have to have his arterial line changed, but that's about it. If things keep going the way they're going and his lungs keep improving, I think he's going in to surgery on Tuesday for sure. We'll find out later today (Monday) when the doctors come in to let us know what they think.
Please continue to be in prayer for:
<3,
Tiff
P.S. To be added to this google group, send an email to ipray4anders...@googlegroups.com. :)
So last night was a pretty rough one. Just as a recap, around 3am, he went into respiratory distress, they put him on the bipap mask and eventually decided to intubate him after they saw that his right lung had collapsed. He was doing fine on the ventilator through the rest of the early morning and around 8:30am, they did the bronchoscopy. I was SO exhausted that I wanted to just sleep through it... but my curiosity got the better of me and I had to get up and watch. They put a little camera down his tube, into his lungs and sucked out a whole lot of mucous. The doctor was able to help clear out the upper lobe of his right lung (the scope couldn't go that far down) and through some internal chest percussion and breathing treatments and suctioning, he's been breathing much better today. His chest expansion is almost equal. There's something so gratifying about suctioning. I love trach suctioning. Yes, it's kind of gross (especially when they've got a nasty infection with nasty smelling bacteria), but that sound of getting the nasty stuff out and watching their oxygen saturation climb back up... oh man. I love it. Should I have been a respiratory therapist? I dunno. I think I'm good with being a nurse. My husband... I never thought he'd help me with my education/career more than being a test subject for my physical assessment practicums, but he's been my one man review of nursing school.
That being said, I go back and forth between approaching him as a patient and approaching him as my husband. Sometimes it's easier to talk to him like a patient... more like talking at him tho...because when I start seeing him as my husband in the bed, my heart starts to break. I've taken care of patients on ventilators... patients who couldn't move... sedated patients... and sometimes it's just a job. I talk like I have a lot of experience.. but not really... just what I learned in nursing school and my clinical rotations. In fact, I used to get really excited that I'd get to see a code blue (respiratory emergency). It's totally different when it's your husband they're doing the emergency intubation on and not someone you're just going to take care of for one day and possibly never see again. Anderson is truly my better half. He's always finding ways to break into, crack open, sneak into my heart and open it up. Even though he isn't even trying to, he's helping me be a better person and a better nurse. Even in the one day that he was extubated, he told me that I need to talk nicer to people. He never lets me get away with anything. Even yawning with my mouth uncovered. This morning, he saw me yawn and he covered my mouth for me. Yep. That's my husband. I love him.
Today was rough though. I barely got any sleep and he kept trying to talk and tell me things and I wasn't understanding. I tried so hard to understand. I wanted so badly to hear what he wanted to tell me. I got more frustrated and more frustrated until I broke down in tears. I sobbed on my mom for a while. Then Anderson just held my head in his hands and patted my head and shoulders and mouthed that "it's going to be OK". I told him the other day that I couldn't have done this without him... even though he's the reason we're here in the ICU, but I really couldn't have done this with anyone else.
Other than the morning shenanigans and communication issues, the day has been fairly stable. He did have to have his arterial line changed, but that's about it. If things keep going the way they're going and his lungs keep improving, I think he's going in to surgery on Tuesday for sure. We'll find out later today (Monday) when the doctors come in to let us know what they think.
Please continue to be in prayer for:
- His lungs - to keep improving, remain expanded, for his oxygenation to stay up. Also for the doctors to figure out the best way to manage his lung issues. I know we'd love for him to be extubated so he can talk to us and eat. Hopefully, they'll figure something out that works for him. He still keeps asking when he can eat and if we can bring him food. Also pray that he'll be able to breathe on his own. Sometimes the machine takes over so much that the lungs and the breathing muscles can get lazy. Pray that it doesn't happen or that his muscles will return when he needs them again.
- Infection - he's had some yeast come up in his sputum and urine cultures, but nothing else so far. He's on a LOT of antibiotics, but he does have the ventriculostomy and the open wound in the back. Even after surgery, please pray that he doesn't develop an infection.
- Fidgety - he's been fidgety today. He's got lots of tubes and things and part of why they had to change out his arterial line was because he kept moving so much that it leaked a little and couldn't be repaired. We're worried that he'll pull out his feeding tube, breathing tube, ventriculostomy... he already pulls off his pulse oximeter sometimes but that one's not a huge deal to put back on. They tried restraining him, but then he freaks out because he can't move his arms. He's on some medium sedation now so he can still hear us and follow commands but I think he's halfway sleeping too. I told him to just sleep. Give in to the drugs. He hasn't slept hardly at all since we've been in the hospital and definitely not since he's been in the ICU. He told me a few days ago that he was afraid to sleep because he was afraid he wouldn't wake up. I told him that the alarms would probably wake him up and that we'd know if things were going wrong so not to worry and to get some rest so he could get better. Poor husband. Afraid of sleeping.
- Peace - I'm not quite sure what he's thinking now that he can't talk. I hope that he's OK in there... I hope that God's giving him great patience and encouragement. I hope that hearing us, seeing us, and feeling our touch is helping him too. Pray that he's holding on to hope in there... and that if he's scared, that he'll somehow let us know so we can answer his questions and be there for him so he doesn't feel like he's bearing the burden alone.
- Surgery - for his body to be strengthened before surgery, for the surgeons to have wisdom, efficiency, and speed, for the nurses and doctors to be on top of it and to do a great job.
- Other health stuff - electrolytes still off here and there, he gets platelets every now and then, for good pee/poo, no bedsores, and a billion other things I can't think of at the moment. Protection please against further complications.
<3,
Tiff
P.S. To be added to this google group, send an email to ipray4anders...@googlegroups.com. :)
Tiffany Chen
Jul 6, 2009, 6:45:31 PM7/6/09
to ipray4anderson
Bonjour mes amis,
So the news for today (so far) is that Anderson is NOT going in to surgery tomorrow morning. The surgeons have rescheduled him for Friday. If all else is the same, the plastic surgeon said that he would be OK with operating on him with a low grade fever. I guess sometimes the nurses and/or the nursing aids don't bother to tell us his temperature when they take it and he's been spiking a temperature and coming down a few times here and there, but regularly enough so that the infectious disease doctors are not comfortable sending him into surgery with a possible infection. They've done all the cultures and they haven't been able to find the source of the infection so they repeated all of them again today (sputum, urine, blood, CSF, wound). Culture results usually come back in a few days. I asked the doctor what would happen in a few days if it's the same trend or getting worse, and he basically said that he's hoping for the best and not the worst.
I'm hoping that his cultures continue to come back negative and that maybe he's just got some thermoregulatory issues. For all I know, the cultures in the past just keep coming back with some yeast. All they know for sure is that he's got yeast and pneumonia.
Today he's off sedation and although he's still sleepy, hopefully he'll be awake so we can talk to him and see his eyes tonight.
So next steps... we're waiting on infectious diseases to clear him and then the next postponed surgery will likely take place this Friday. I don't think we can wait too much longer because Dr. Azeem said that having a ventriculostomy longer than 2 weeks will drastically increase the risk of meningitis.
He's been mostly asleep all day. I pass the time by checking emails and staring at his ventilator. I stand next to him and hold his hand... rearrange his blankets, find some open skin on his face and give him a kiss. He's got tubes coming out everywhere, tape securing the tubes, and a big ol' plastic strap thing securing his breathing tube so kissable real estate is at a minimum right now. Oh and I eat every once in a while. Since there've been so many days with too much excitement, today is a very welcome relief. I'm noticing on his ventilator that he's been initiating nearly all of his own breaths lately. That's good.
Prayer Requests
So the news for today (so far) is that Anderson is NOT going in to surgery tomorrow morning. The surgeons have rescheduled him for Friday. If all else is the same, the plastic surgeon said that he would be OK with operating on him with a low grade fever. I guess sometimes the nurses and/or the nursing aids don't bother to tell us his temperature when they take it and he's been spiking a temperature and coming down a few times here and there, but regularly enough so that the infectious disease doctors are not comfortable sending him into surgery with a possible infection. They've done all the cultures and they haven't been able to find the source of the infection so they repeated all of them again today (sputum, urine, blood, CSF, wound). Culture results usually come back in a few days. I asked the doctor what would happen in a few days if it's the same trend or getting worse, and he basically said that he's hoping for the best and not the worst.
I'm hoping that his cultures continue to come back negative and that maybe he's just got some thermoregulatory issues. For all I know, the cultures in the past just keep coming back with some yeast. All they know for sure is that he's got yeast and pneumonia.
Today he's off sedation and although he's still sleepy, hopefully he'll be awake so we can talk to him and see his eyes tonight.
So next steps... we're waiting on infectious diseases to clear him and then the next postponed surgery will likely take place this Friday. I don't think we can wait too much longer because Dr. Azeem said that having a ventriculostomy longer than 2 weeks will drastically increase the risk of meningitis.
He's been mostly asleep all day. I pass the time by checking emails and staring at his ventilator. I stand next to him and hold his hand... rearrange his blankets, find some open skin on his face and give him a kiss. He's got tubes coming out everywhere, tape securing the tubes, and a big ol' plastic strap thing securing his breathing tube so kissable real estate is at a minimum right now. Oh and I eat every once in a while. Since there've been so many days with too much excitement, today is a very welcome relief. I'm noticing on his ventilator that he's been initiating nearly all of his own breaths lately. That's good.
Prayer Requests
- Fevers - to stop... or at the very least to trend the same and not get worse/higher/more frequent.
- Cultures - to come back negative and show no signs of infection... also so that he doesn't develop any new infections.
- No Infections! I know I already said it in the "cultures" section, but it's really important that he doesn't develop any or any more if he's already got one.
- Rest and strength - he seems to be resting much better today and he appears to be stronger as well. Hope that it keeps up so that he'll be good to go to surgery and then recovery and then hopefully some good news ahead.
- Other health stuff - blood counts, pee/poo, no bed sores, mental status, communication while intubated, maintain range of motion... etc.
- A miracle of healing.
Since today's update was pretty low key... I thought I'd share some funnier pictures. I personally have NEVER seen Anderson drunk. We never drink alcohol together. OK never is not really "never". There was one time where we did go to a bar, but I think that might have been the only time and it was a REALLY long time ago. Sometimes they put a little alcohol on top of the Papaya cream at Brazilian BBQ. That's about it. Since I've never seen him drunk, I only have pictures to go by. I have these 2 pictures of him while intoxicated and i think that it might be some kind of trend that this is what he does when he's got some alcohol in him. He looks really happy though so I think he's probably a funny drunk. I have no pictures of myself drunk... probably because I don't think I've ever been drunk. I get sleepy (and I don't change colors like most asians do) when I drink alcohol and therefore have never drunk myself into any state where taking pictures of me would even be remotely amusing. Anderson on the other hand... he's so funny sober, I wonder what he'd be like drunk. Maybe I'll never know.
<3,
Tiff
P.S. Someone else mentioned to me that you don't NEED to be subscribed to this google group to continue to get updates. You can simply visit and bookmark the google group website at http://groups.google.com/group/ipray4anderson at your own time, on your own terms if you would not like the updates to be delivered to your inbox. If you do like to receive my emails daily or sometimes multiple times a day...you can always send an email to ipray4anders...@googlegroups.com to be added or also subscribe once you're on the google group page.
<3,
Tiff
P.S. Someone else mentioned to me that you don't NEED to be subscribed to this google group to continue to get updates. You can simply visit and bookmark the google group website at http://groups.google.com/group/ipray4anderson at your own time, on your own terms if you would not like the updates to be delivered to your inbox. If you do like to receive my emails daily or sometimes multiple times a day...you can always send an email to ipray4anders...@googlegroups.com to be added or also subscribe once you're on the google group page.
Tiffany Chen
Jul 8, 2009, 1:02:52 AM7/8/09
to ipray4anderson
Hellooooo everyone,
Not too much excitement today, which is a good thing. His big issues today were managing his blood pressure, trying to get his fevers down, and his sodium up. He's breathing really well with minimal support from the ventilator. He spent all of yesterday resting and getting the sedation medicine out of his system... this morning when he "woke up" he was wide awake and agitated. He was upset at me for not being the first person he saw when he woke up. He told me that I had to tell everyone what he was saying and that I shouldn't leave. He asked me if he'd done the surgery and I had to tell him no... not until Friday. He wanted to quit and be done with everything. He wanted to pull out his breathing tube. He asked me why I was being so selfish and why I was making him suffer. Needless to say... the nurse, Kelly and I decided to put him back on a low dose of sedation. I loved seeing his eyes and "talking" to him, but... I don't know. I didn't want him to be miserably awake. Now he's only half awake. He still hears us, he can ask for things he wants, he tells us when he's hot/cold... but for the most part, he's really sleepy.
It made me think though. Were we being selfish? No one can feel what he feels... except himself and God. Maybe he's reached his limit... maybe he's confused. I have no idea. I hope that he still has hope. I try to talk to him a little every night and mostly he just says that he wants to sleep so I let him sleep. We had all decided that we weren't going to give up until he could no longer communicate with us anymore. I don't know. Right now it's day by day. He's breathing well, his heart's OK, oxygen's good, still peeing, still pooing... his big issue would be the pneumonia... well and the surgery. If they could clear up the pneumonia, they could take out the tube, then they could take out the feeding tube, do a swallow eval and then he could talk and eat again. From our standpoint, that's what we see, but I'm not sure what he feels. I will try to ponder it more with God.
Prayer Requests
<3,
Tiff
Not too much excitement today, which is a good thing. His big issues today were managing his blood pressure, trying to get his fevers down, and his sodium up. He's breathing really well with minimal support from the ventilator. He spent all of yesterday resting and getting the sedation medicine out of his system... this morning when he "woke up" he was wide awake and agitated. He was upset at me for not being the first person he saw when he woke up. He told me that I had to tell everyone what he was saying and that I shouldn't leave. He asked me if he'd done the surgery and I had to tell him no... not until Friday. He wanted to quit and be done with everything. He wanted to pull out his breathing tube. He asked me why I was being so selfish and why I was making him suffer. Needless to say... the nurse, Kelly and I decided to put him back on a low dose of sedation. I loved seeing his eyes and "talking" to him, but... I don't know. I didn't want him to be miserably awake. Now he's only half awake. He still hears us, he can ask for things he wants, he tells us when he's hot/cold... but for the most part, he's really sleepy.
It made me think though. Were we being selfish? No one can feel what he feels... except himself and God. Maybe he's reached his limit... maybe he's confused. I have no idea. I hope that he still has hope. I try to talk to him a little every night and mostly he just says that he wants to sleep so I let him sleep. We had all decided that we weren't going to give up until he could no longer communicate with us anymore. I don't know. Right now it's day by day. He's breathing well, his heart's OK, oxygen's good, still peeing, still pooing... his big issue would be the pneumonia... well and the surgery. If they could clear up the pneumonia, they could take out the tube, then they could take out the feeding tube, do a swallow eval and then he could talk and eat again. From our standpoint, that's what we see, but I'm not sure what he feels. I will try to ponder it more with God.
Prayer Requests
- Fevers - it could mean infection or if could mean thermoregulatory issues. He does have pneumonia which appears to be getting better from the chest xrays, but the infectious disease doctors don't like his temperature trends... frankly neither do I. But to them it seems like it's all a formula of which combination of drugs can they give to get rid of whatever they think he has but cannot find. I'm just afraid that all of these antibiotics are going to give him a super infection but that is down the road and hopefully it'll NEVER go there. Pray that the fevers resolve and that if it's being caused by an infection, that they would find it and treat it specifically.
- Blood pressure - he's on a drip that increases his blood pressure, but he's also on other drugs that lower his blood pressure as a side effect. The nurses need to find a balance that works for him. It's a constantly changing thing so they have to constantly change with it. Pray that they'll find that balance and be able to manage it.
- Wounds and things... pray that they don't get infected. He's got an open wound, a central line, an arterial line, ventriculostomy (drains cerebral spinal fluid out of his brain), breathing tube, feeding tube, peeing tube... lots of things that could get infected. Pray that they are protected from germies.
- Inside... pray that what's going on in his head is also protected from the evil one. Pray that God would bless him with good thoughts... hopeful thoughts... good dreams...
- Electrolyte and blood counts to be normal. Sodium's important because low sodium could cause swelling in his brain which is bad bad bad. He's been on steroids to reduce inflammation for a while now so that kind of causes his immune system to be suppressed a bit and it also causes high blood sugar which is manageable, but bacteria love sugar. His red blood cells and hematocrit have been a little on the low side, but his white blood cells, the ones that fight infection, have been climbing. They were super low and now they're in the "normal" range, but we're hoping that it's his bone marrow kicking in and producing them and that they're not being produced because of infection.
- A miracle of healing please please please
<3,
Tiff
Tiffany Chen
Jul 9, 2009, 5:42:25 PM7/9/09
to ipray4anderson
Hi all,
Not many changes... very little ones here and there with his blood, electrolytes... they changed his central line yesterday. I was there to point out that his ventriculostomy might be clogged.. and it was... and they fixed it. One good thing about staring at his monitor all day long is that I know when something's different. He hasn't had much of a fever since last night... it's still a little higher than normal but it's been pretty low today. Hopefully it'll stay that way. I counted... his surgery has been postponed 3 times. Infectious diseases came in just now and told me that he's been cleared for surgery tomorrow. So tomorrow's surgery will be the ventriculoperitoneal shunt placement and closure of his wound on his upper back. Right now the ventriculostomy is a tube coming out of his head that's draining the excess cerebral spinal fluid out to relieve pressure caused by the tumor in his cerebellum. The shunt will internalize that tube so that it will drain inside his body and his body will get rid of the fluid on its own.. hopefully. Plastic surgery will be rearranging his back muscles to cover and close up the wound. I think it might take them... 3-4 hours total. Sounds really quick.
Tomorrow will be our 6 month wedding anniversary. I can't believe it. We've been married for 6 months? We've been in Houston for 3 1/2 months? Wow. A whole lot has happened to us. Definitely life changing stuff. Last night I was feeling a little sad. I felt like I was starting to forget what his voice sounded like... starting to forget what it was like to be together outside the hospital... so I told him yesterday night and he gave me a hug and patted me on the back while he hugged me. I miss him. I miss him a lot. Today, he's been sleeping all day so not much interaction yet. Maybe he'll wake up at night like he normally would. I remember those days when he'd wake up around 2-3am and harass the nurses to let him out of the room. That wasn't too long ago.
Prayer Requests:
Tiffany Ng (Chen)
Not many changes... very little ones here and there with his blood, electrolytes... they changed his central line yesterday. I was there to point out that his ventriculostomy might be clogged.. and it was... and they fixed it. One good thing about staring at his monitor all day long is that I know when something's different. He hasn't had much of a fever since last night... it's still a little higher than normal but it's been pretty low today. Hopefully it'll stay that way. I counted... his surgery has been postponed 3 times. Infectious diseases came in just now and told me that he's been cleared for surgery tomorrow. So tomorrow's surgery will be the ventriculoperitoneal shunt placement and closure of his wound on his upper back. Right now the ventriculostomy is a tube coming out of his head that's draining the excess cerebral spinal fluid out to relieve pressure caused by the tumor in his cerebellum. The shunt will internalize that tube so that it will drain inside his body and his body will get rid of the fluid on its own.. hopefully. Plastic surgery will be rearranging his back muscles to cover and close up the wound. I think it might take them... 3-4 hours total. Sounds really quick.
Tomorrow will be our 6 month wedding anniversary. I can't believe it. We've been married for 6 months? We've been in Houston for 3 1/2 months? Wow. A whole lot has happened to us. Definitely life changing stuff. Last night I was feeling a little sad. I felt like I was starting to forget what his voice sounded like... starting to forget what it was like to be together outside the hospital... so I told him yesterday night and he gave me a hug and patted me on the back while he hugged me. I miss him. I miss him a lot. Today, he's been sleeping all day so not much interaction yet. Maybe he'll wake up at night like he normally would. I remember those days when he'd wake up around 2-3am and harass the nurses to let him out of the room. That wasn't too long ago.
Prayer Requests:
- Fevers - PTL that they're gone today... thank you for your prayers. Pray that they go away... also that the infection or whatever was causing them would be gone too.
- Surgery tomorrow - pray for Anderson to get his rest, for his body to be strengthened, for the surgeons and their strength, wisdom, acuity, efficiency... it'd be funny to think that McDreamy and McSteamy would be operating on him tomorrow (neurosurgery and plastics)... tomorrow it'll be Dr. Azeem and Dr. Garvey or Gravey... I forget.
- Strength - pray for his blood pressure to remain stable, breathing, oxygenation, blood, heart, intracranial pressure, electrolytes, kidneys, bowels... everything. Pray that he'll get through surgery and recovery OK. Also for his emotional, mental, and spiritual strength... it's just him and God. Pray that God's keeping him safe and sound and full of hope and peace.
- No complications or infections - pre or post-op
- A miracle of healing - every single day is a miracle. As long as he's still alive... I'll be praying for a miracle of complete healing.
- I think we're all pretty tired, in general. Pray that his parents will have peace. Kelly's pretty much the one that tries to answer all their questions, but it can be frustrating for them to feel out of the loop and out of control. Pray for his mom especially... she has some heart and blood pressure issues... she cries a lot when she's in the room with him. Kelly's got a lot on her mind and she's trying to be strong for everyone, but I know that all her emotions have to be in there somewhere. She always tells me to occupy myself and get my mind off it... but I just want to be sad sometimes. I hope she can just be sad sometimes too. It helps to have Brandon and Kevin here. At least she can talk to Kevin and Brandon keeps her busy too.. and he makes us all laugh.
- As for me, I do have peace about the situation. I have my ups and downs emotionally, but I feel that I'm pretty grounded and I know and am holding on to God's truths and promises for me and for Anderson. I don't blame God. I don't cry out and say "it's not fair!". I do get frustrated at times. I do sometimes wish that life was different for us but this is what God's given us and there's a whole lot of good stuff to appreciate. I'm trying to live my life in obedience to God while I wait for His work and His will to unfold and I pray. I could probably be praying MORE, but I do pray a lot more than I used to before all of this. I'm not really someone who needs to be around people a lot. I'm pretty comfortable with being by myself with Anderson... in the semi-quietness of the ICU. I do enjoy hearing about people's lives... writing emails back and forth... I go back to the apartment every night to shower, eat, and watch some TV. The past two days I've been taking the stairs down to the cafeteria and taking the stairs back up. I get a little winded at the 5th floor but I get to the 7th OK. I used to walk down when he was on the 12th floor but I couldn't make it all the way back up. 12 flights is a lot. I learn from the nurses and the doctors when they want to explain. The volunteers aren't providing any craft kits anymore. I guess that's OK. I think I've done over 20 craft kits since March. I hope I didn't singlehandedly put them out of budget. :P I have no regrets. If tonight is my last night with Anderson, I won't ever wonder if he knew I loved him or that he loved me. I am absolutely, without a doubt certain that we gave each other everything we had to give and that God increased both of our capacities to give and receive. It's been a long, hard road for the two of us but if our life together is another 6 months or even 6 years of this or whatever God blesses us with... I will gladly remain here by his side and be whatever he needs me to be and do whatever he needs me to do... til death do us part.
Hi there,
Some of you may or may not know that my fiance and I got married on Saturday, January 10th, 2009. We found out on Wednesday, Jan 7, 2009 that his brain tumor showed regrowth on the MRI and the doctors estimated that he had 6 months to live. So we decided to get married in the backyard with our immediate family; however, our family and friends had a different wedding in mind for us. On Thursday afternoon, we got our wedding license still thinking that we'd just get married in the backyard. By Thursday 11pm, my parents had decided that they wanted to invite my extended family so we were going to have the ceremony in a small room at our church. By Friday morning 10am, I found out that my mom had called the pastor at our church and he decided that we should have the ceremony in the biggest room at our church and that we should invite the entire congregation. By 12pm, we had a wedding coordinator, a wedding planner, a "caterer", a decorating team, photographers, videographers, 3 flower girls, 1 ring bearer, 2 bridesmaids and 2 groomsmen. By 2pm, I had a hair/makeup lady hired, borrowed a dress, veil, headpiece, jewelry and we were off to get my mom a dress at the mall. Somewhere between 2 and 5pm, we had a wedding cake ordered, a florist secured, an additional professional photographer and a wedding music team. By 5pm we were getting our nails done and things were starting to wind down, for me and my mom anyway. By 9pm we had bought 2 bridesmaids dresses and were eating dinner at California Pizza Kitchen wondering at the events of the day. The morning of the wedding (Saturday) was spent in hair and makeup for me and I'm hoping that my then fiance was sleeping in. We had rehearsal at 3:30pm and the ceremony began at 4:30pm. We were somehow able to feed 500+ people at the ceremony, and we found a local hotel that had prepared a ballroom with buffet for 200 people with maybe 12 hours notice. It was unbelievable how our family and friends banded together and worked so hard to give us a beautiful wedding. My husband and I are still touched and brought to tears by the love and support that was shown to us just a few weeks ago.
So that is my 30 hour wedding miracle story and here is the 14 minute highlight reel that a friend/videographer so graciously (& speedily) prepared for us and for our friends. Enjoy. :) (Sorry, the loading of the video is a bit slow and you need to have quicktime installed, but I hope your patience will be rewarded)
Love,Some of you may or may not know that my fiance and I got married on Saturday, January 10th, 2009. We found out on Wednesday, Jan 7, 2009 that his brain tumor showed regrowth on the MRI and the doctors estimated that he had 6 months to live. So we decided to get married in the backyard with our immediate family; however, our family and friends had a different wedding in mind for us. On Thursday afternoon, we got our wedding license still thinking that we'd just get married in the backyard. By Thursday 11pm, my parents had decided that they wanted to invite my extended family so we were going to have the ceremony in a small room at our church. By Friday morning 10am, I found out that my mom had called the pastor at our church and he decided that we should have the ceremony in the biggest room at our church and that we should invite the entire congregation. By 12pm, we had a wedding coordinator, a wedding planner, a "caterer", a decorating team, photographers, videographers, 3 flower girls, 1 ring bearer, 2 bridesmaids and 2 groomsmen. By 2pm, I had a hair/makeup lady hired, borrowed a dress, veil, headpiece, jewelry and we were off to get my mom a dress at the mall. Somewhere between 2 and 5pm, we had a wedding cake ordered, a florist secured, an additional professional photographer and a wedding music team. By 5pm we were getting our nails done and things were starting to wind down, for me and my mom anyway. By 9pm we had bought 2 bridesmaids dresses and were eating dinner at California Pizza Kitchen wondering at the events of the day. The morning of the wedding (Saturday) was spent in hair and makeup for me and I'm hoping that my then fiance was sleeping in. We had rehearsal at 3:30pm and the ceremony began at 4:30pm. We were somehow able to feed 500+ people at the ceremony, and we found a local hotel that had prepared a ballroom with buffet for 200 people with maybe 12 hours notice. It was unbelievable how our family and friends banded together and worked so hard to give us a beautiful wedding. My husband and I are still touched and brought to tears by the love and support that was shown to us just a few weeks ago.
So that is my 30 hour wedding miracle story and here is the 14 minute highlight reel that a friend/videographer so graciously (& speedily) prepared for us and for our friends. Enjoy. :) (Sorry, the loading of the video is a bit slow and you need to have quicktime installed, but I hope your patience will be rewarded)
Tiffany Ng (Chen)
Tiffany Chen
Jul 11, 2009, 12:49:46 AM7/11/09
to ipray4anderson
Hi everyone,
Today was a big day. :) It was both our 6 month wedding anniversary and also Anderson's surgery day. Surgery had been postponed 4 times so we're glad that it's over with and he doesn't have a drain coming out of his head and he doesn't have to do dressing changes 3 times a day anymore. Hopefully now he can rest and recuperate. He still hasn't really woken up yet but he squeezes hands and gives thumbs up here and there so we know he's still in there. We're so glad that the surgeries are behind us. Praise God that they went well with no complications. It was only maybe a little more than 4 hours. So SO thankful and thankful for all your prayers and well wishes.
Also, his fevers appear to be gone. :) Big yay! Now infectious diseases won't have to mess with him so much. They're so obsessed with his temperature. Glad they're happy now and I'm happy that they're happy he doesn't have a blazing infection. Thank you SO MUCH for your prayers for this especially. The docs totally think that they treated him for Clostridium difficile otherwise known notoriously as C.diff. C. diff causes pretty nasty diarrhea, the alcohol hand sanitizer doesn't get rid of the spores from your hands so you have to wash with real soap and water (which is what I prefer anyway) and I've heard that the smell will run you out of the room. I've been living with him all this time and I'm pretty sensitive to smell. I don't think he had C. diff but if that's what makes them happy, they can go ahead and think that. Maybe they're right and I'm wrong but either way they were pretty darn excited when his temperature went down. Really. It's so rare to see a happy doctor around here. I guess it's a cancer hospital so they don't get a whole lot of good news. Anyway, enough about them.
Prayer requests
I thought about pasting in the first installment of Anderson's testimony... but it's hard to know how long to make the first installment. So far, I have 14 pages single-spaced saved in a word doc and I haven't even written out the part where we're admitted to MD Anderson for the spinal tumor yet. I don't know when I'll finish. Maybe I'll save it for another update. I'm pretty tired. I think I'll go to bed now...
I'll end with a part of a chapter that I read today. It comforted me in the waiting room.
Psalm 91:14 The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
15 When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
16 I will reward them with a long life
and give them my salvation.
Here's to faith and hope...
<3,
Tiff
Pictures:
Today was a big day. :) It was both our 6 month wedding anniversary and also Anderson's surgery day. Surgery had been postponed 4 times so we're glad that it's over with and he doesn't have a drain coming out of his head and he doesn't have to do dressing changes 3 times a day anymore. Hopefully now he can rest and recuperate. He still hasn't really woken up yet but he squeezes hands and gives thumbs up here and there so we know he's still in there. We're so glad that the surgeries are behind us. Praise God that they went well with no complications. It was only maybe a little more than 4 hours. So SO thankful and thankful for all your prayers and well wishes.
Also, his fevers appear to be gone. :) Big yay! Now infectious diseases won't have to mess with him so much. They're so obsessed with his temperature. Glad they're happy now and I'm happy that they're happy he doesn't have a blazing infection. Thank you SO MUCH for your prayers for this especially. The docs totally think that they treated him for Clostridium difficile otherwise known notoriously as C.diff. C. diff causes pretty nasty diarrhea, the alcohol hand sanitizer doesn't get rid of the spores from your hands so you have to wash with real soap and water (which is what I prefer anyway) and I've heard that the smell will run you out of the room. I've been living with him all this time and I'm pretty sensitive to smell. I don't think he had C. diff but if that's what makes them happy, they can go ahead and think that. Maybe they're right and I'm wrong but either way they were pretty darn excited when his temperature went down. Really. It's so rare to see a happy doctor around here. I guess it's a cancer hospital so they don't get a whole lot of good news. Anyway, enough about them.
Prayer requests
- Recovery - pray that his wounds heal well, drain well, and don't get infected.
- Lungs - he's had a little blood come up when he's suctioned... they say it's trauma from suctioning and the bronchoscopies. Pray that his lungs heal. Also that the mucous and whatever other liquids are in there would clear up too. We'd love to have him extubated again, off the ventilator and talking and eating again.
- Rest - we want him to rest, but we also want to know how he's doing.
- Blood pressure - he's still really sensitive to changes in his body position and he's kind of dependent on the vasopressors (drugs) that are keeping his blood pressure up. They've been trying to wean him off for a week now but it's pretty erratic. Please pray that his blood pressure normalizes and that he won't need the drugs.
- Electrolytes and blood counts - still not "normal". Pray for a system of medicines and supplements that works for him.
- Peace and comfort - he's off sedation but still not awake yet. Pray that he'll be in peace and comfort as he's laying there. I hope he's having good dreams.
- A miracle of healing.
- Also something kind of minor-ish but still important... dealing with the nurses in the ICU. There are some that we like and get along with and some that we really don't. Kelly and I are in the process of trying to work something out so that they will assign us more of the ones that we are comfortable with but it somehow isn't as straightforward as we thought it'd be. And now it's the weekend and hardly anything happens on the weekends so we'll have to see how it goes.
I thought about pasting in the first installment of Anderson's testimony... but it's hard to know how long to make the first installment. So far, I have 14 pages single-spaced saved in a word doc and I haven't even written out the part where we're admitted to MD Anderson for the spinal tumor yet. I don't know when I'll finish. Maybe I'll save it for another update. I'm pretty tired. I think I'll go to bed now...
I'll end with a part of a chapter that I read today. It comforted me in the waiting room.
Psalm 91:14 The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
15 When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
16 I will reward them with a long life
and give them my salvation.
Here's to faith and hope...
<3,
Tiff
Pictures:
- We just had our 6 month wedding anniversary, and we spent our 5 month in the hospital.. but for our 4 month (which also happened to be mother's day), he went on ftd and got flowers sent to me. It was REALLY meaningful because the internet at the apt is SO slow and he was just starting to get the hang of using the computer again. It really meant a lot to me. He even went and specially chose this arrangement because there were calla lilies in them and he always tries to get me calla lilies because I really like them.
- Our friend, Laurie, sent us a care package and we received it right before Anderson was hospitalized back in May. In the care package was a glow-in-the-dark puzzle. He got the box open on his own even though it took him a while and he was almost cursing the box for being child-proof and impossible to open. He did the puzzle all on his own, which was good hand-eye coordination for him and he was really proud. He had a little help from the manufacturer though... they didn't always separate all the pieces, but it's OK. It was his big accomplishment for the day and we were both really happy.
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