Jun 10, 2009, 12:56:05 AM
to ipray4anderson
Never a dull moment for Tifferson.
Change is good though. A lot of people don't like change, but when things stay the same or stable... I start to forget, take for granted, find a routine and everything becomes mechanized. Change forces me to evaluate and reevaluate... and remember.
Prayer Requests
(and here comes the long-winded portion of my emails)
Frustrations and blessings - doctors and therapists have been frustrating us lately and our day nurses have been blessings.
I'd like to encourage everyone to stop and consider your own life. Don't leave anything unsaid (unless it's nasty, then you can leave that buried somewhere), if you're holding on to a grudge, let it go and move on, if you have an inkling to do something, to push yourself outside your comfort zone, to reach out to someone, to confront someone, to clear the air, to apologize for something you're guilty about from eons ago... just do it... and if you love someone, please tell them, show them, shower them just to make sure you got the message across. Life's too short to be afraid of changes. And kudos to you if you've read through this entire email. I still can't believe some of you really do read it all.
<3,
Tiff
Pictures: Valentine's Day 2006. Prior to discovery of brain tumor in October of 2006. Not my most shining moment... Anderson got me a Martha Stewart Baking book and 3 books on how to make gumpaste/sugar flowers because I was in love with cake decorating at the time... and I still am, but who's got the time?. I got him altoids in a heart shaped-container from the dollar store and costco coupons. I'm not even going to defend myself, I really have nothing to say... I was shamed to the max. He even wrapped my gift and I think I pulled his out of my trunk. Does he look happier with his gift or do I? Trust me, he never let me hear the end of that one...
Change is good though. A lot of people don't like change, but when things stay the same or stable... I start to forget, take for granted, find a routine and everything becomes mechanized. Change forces me to evaluate and reevaluate... and remember.
Prayer Requests
- Skilled Nursing Facilities - Kelly visited a few SNFs near the Texas Medical Center. Anderson's parents say that they're pretty nice. Kelly'll share with me tomorrow and I hope to go check them out too. Hopefully, we'll find at least one we like, they'll accept us, they'll accept Anthem Blue Cross, they'll be willing to work with MD Anderson and coordinate appointments, we'll be able to transfer there relatively easily, and we'll be comfortable there. Lots to be in prayer for.
- Glasses - the tech was able to get us Anderson's latest prescription and do some measurements, which we found out were done incorrectly once Kelly took them to the optometrist. Glasses will be done on Thursday. Hopefully MD Anderson won't put up a huge fuss to cover the cost since they threw out his original pair. Yay for that prayer request getting answered.
- Medical issues - sodium's still low, blood counts still low, still on antibiotics, low BP here and there, fever hasn't come back, no new neurological symptoms except transient headache and occassional neck pain around the surgical scar. Hoping for the best. Please continue to be in prayer for the resolution of these issues.
- Chemo - at the earliest, he'll be starting chemo next week. Doctors aren't too hopeful that it will help much, but they are willing to try.
(and here comes the long-winded portion of my emails)
Frustrations and blessings - doctors and therapists have been frustrating us lately and our day nurses have been blessings.
- There's nothing like a medical dilemma to get hordes of doctors flowing in one right after another... oftentimes, they haven't coordinated well and they tell us differing updates. There's also nothing like hordes of doctors coming around to pretty much squash happiness and hope and bring everyone crashing down to the reality of human frailty. I don't even know if that sentence made any sense. Doctors are depressing. Nothing much has changed since yesterday except that we found out we had to be out of the hospital tomorrow, but I spent most of the day/night in tears because they reminded us about Anderson's prognosis, about palliative care, about hospice, about our broken health care system and insurance dilemmas. He's improved so much since the ICU but if you stand back and look at everything from their standpoint... he's not doing the greatest and they don't have much hope for him... but they'll do what they can.
- Basically what happened today was that the doc came in this morning and told us that insurance would only cover Anderson's stay for today. That means that tomorrow we have to either transfer to a sub-acute floor or to another facility. The only places in the hospital that might work for Anderson would be the rehab floor or palliative care, but consults from both floors said that he wasn't a good fit. Since his prognosis was so poor and he's so fatigued, rehab said that he couldn't tolerate rehab and they wouldn't be able to create any attainable goals for him to reach. I kinda think that's a little bit of BS but that's what the rehab doc believes so that's what he put in his notes. Anyway, he wasn't budging. The off site rehab center they recommended said that the hospital wanted to keep Anderson at the hospital for treatment, so they rejected the referral. OK. Whatever. Palliative care said that since he's not in any pain, doesn't have an altered mental state, AND that he could still be undergoing cancer treatment, that he wouldn't be a fit for their floor either. So frustrating. The oncologist was trying to tell us that chemo wasn't really going to work so maybe we should look into palliative care or hospice, but he's still willing to do the treatment if that's what we want. I think we made it obvious that we want to try and we're not quitting yet. Palliative care, even though they were nice, told us that she didn't have any options for us. Rehab kept saying that no rehab facility would accept him and were pushing palliative and hospice. Insurance will say that we're lying to them if we transfer to palliative/hospice and still want to undergo treatment...SO, our solution was to find a skilled nursing facility to provide sub-acute care and some rehab as we wait for the week to pass before he can undergo chemo safely...and also find a place that will be willing to facilitate the treatment when it comes time. I kinda wish that someone would have just said that straight out instead of giving us all kinds of rejection and restrictions. Just tell us what we CAN do, please. So that was basically 4 hours of our day... going back and forth with doctors from various departments and finally ending up seeing the case manager. Argh. But I'm glad it all got out and we can work towards a solution.
- On a lighter note, for 2 nights in a row, Anderson's asked his night nurse if he could go "joy riding" around the hospital with me in a transport chair of some sort. Last night I woke up around 4am to Anderson trying to convince the same nurse to let us out of the room. Man... if that nurse had a heart, I don't know how she could have walked straight from all the guilt trips he laid on her to try to get her to agree. The one thing I remember really clearly was that he said, "I'm living day to day here. I don't know how much time I have left, but I want to do something for her. I just want to take her downstairs and get a smoothie and maybe a cinnamon roll. It's not much and it means nothing to you, but it would mean everything to me because it's all I can do for her." Who says you can't be romantic when you're stuck in a hospital bed? :P The charge nurse agreed to let us get out of the room tonight if PT would order the special wheelchair he needs to get out of the room. So, we had a date. A date to get a smoothie downstairs. PT, however, did not come through. I know they tried, but with the hordes of doctors coming in from 1-5pm, they didn't have much of a chance to see us and we never found that special wheelchair that they supposedly ordered. Thankfully, our day nurse was super awesome and she arranged for us to take the neuro chair off the floor, downstairs, and outside. She even spent an hour with us to walk around the hospital. The nursing student came too. So we had our date, but with two other nurses chaperoning. It was nice. We went outside, Anderson got some sun. It was hard to breathe since it was so hot and humid outside. We then went inside to get a smoothie from Smoothie King and then we went back upstairs. We sat by the window in the room for a while until Anderson got tired and went back to bed. It was so fun to just get out. Major blessing.
- Going back to the doctors reminding us about the gravity of our situation... Anderson and I had a good cry and a good chat tonight. I got all emotional today and I just wanted to spend some time "remembering" with Anderson. I don't know why it suddenly hit me tonight, but I realized that he's the only one that I can say "remember that time when..." and he'll remember. I got really sad thinking about all the memories that I'm going to have to keep by myself, all the esoteric nuances of our relationship that will cease having meaning once my other half isn't there to share them with me. And most of all, sobbing because we've spent a lifetime finding each other and building our relationship to this point, only to have it all crumble away. We were pondering about how our love has grown over the years... he said that before he met me, he never thought he could love anyone more than a 3 (0 being no love and 10 being max love). And then he said that somehow...(by God's grace, he says) he got through my needy/clingy stage, somehow decided that I was worth it (yes, it kinda hurt to hear it...) and before he knew it, we were married and now he loves me at an 11. For me, I think I always loved him at a 10 as far as I knew, but that my capacity to love him has grown inifinitely since the beginning of our relationship. Even though I loved him with everything I had back then... it wasn't much, it was still selfish and there were things that I thought were off limits even if we got married (i.e. my career, my own dreams for my life). If the greatest measure of love is if a man can lay down his life for his friends... I can definitely say that I would lay down my life for him. If God came to me right now and said, your life so that he could live, I would do it in a heartbeat. He said that he'd never let me because he'd get there first and lay down his life for me before I even got a chance to be propositioned.
- Both of us are really glad that God's gifted us with the time right now to be together, to talk, to remember together, to support one another, and to maybe say a prolonged goodbye if that's what God chooses to do with Tifferson. Every day is a miracle, but every day we continue to ask for another one for the next day.
- Speaking of miracles... another destructive thought I had... was that I wasn't worthy enough to receive a miracle of healing for my husband. Who am I that God would choose to bless us to gargantuan proportions with a miracle? I'm nothing. A nobody. A speck in the timeline of humanity. I have nothing to offer and nothing to give to even begin to repay such a priceless gift. I don't deserve it nor do I deserve a second thought from the creator of the heavens and the earth. I shared my thought with Anderson. It hit us both that those were evil lies told by the evil one to derail our hope and to suggest that we fix our gaze shamedly to the ground as opposed to lifting our eyes to the heavens from where our help comes from. Yes, we are undeserving, and yes, we have nothing to offer God... except our lives.
I'd like to encourage everyone to stop and consider your own life. Don't leave anything unsaid (unless it's nasty, then you can leave that buried somewhere), if you're holding on to a grudge, let it go and move on, if you have an inkling to do something, to push yourself outside your comfort zone, to reach out to someone, to confront someone, to clear the air, to apologize for something you're guilty about from eons ago... just do it... and if you love someone, please tell them, show them, shower them just to make sure you got the message across. Life's too short to be afraid of changes. And kudos to you if you've read through this entire email. I still can't believe some of you really do read it all.
<3,
Tiff
Pictures: Valentine's Day 2006. Prior to discovery of brain tumor in October of 2006. Not my most shining moment... Anderson got me a Martha Stewart Baking book and 3 books on how to make gumpaste/sugar flowers because I was in love with cake decorating at the time... and I still am, but who's got the time?. I got him altoids in a heart shaped-container from the dollar store and costco coupons. I'm not even going to defend myself, I really have nothing to say... I was shamed to the max. He even wrapped my gift and I think I pulled his out of my trunk. Does he look happier with his gift or do I? Trust me, he never let me hear the end of that one...
Jun 10, 2009, 11:44:20 PM
to ipray4anderson
Hey all,
A much quieter day for us. Thankfully. :) June 10th was our 5 month wedding anniversary. :) I can't believe 5 months have already gone by. We were talking about it today and it's been the most eventful, most stressful, most challenging 5 months of our lives, but it's also been the most blessed and we've had the best time of our lives these past 5 months. We couldn't have been so blessed were it not for the challenges that we've endured and are still enduring and all of you definitely are a huge part of why we've been so blessed.
Updates and Prayer Requests
Oh and I've also heard that some of you want to encourage us but don't know how, don't know what to say or do. You don't have to say anything magical... just be our friends. Be honest with how you feel because it makes us feel better knowing that you're hurting with us as well and not just trying to fix our pain or something like that. Update us on your lives... just be our friends. That's the best way to encourage us and help us feel "normal" again.
Pictures: Food. Anderson is a pretty good cook. I'm not a cook. I'm more of a baker. It kind of suits our personalities... cooking is more of an art and baking is more of a skill. He improvises, I follow directions. He also never measures. He's an eye-baller. Me... I like the measuring tools... cups, spoons, scales. I love using the leveler (hardware, not bakeware). I love making that little bubble sit steadily between the lines. The first time I saw a leveler I thought it was genius! OK anyway... back to the pictures. Anderson cooks shrimp... he loved to use paprika and parsley flake. He also used to make crepes a lot with his roommates in college. One day we decided to make this "1000 layer" crepe cake that we saw on food network. I think it was maybe only 20-30 crepes in our cake. He's also really good at flipping things in the pan. He tried to teach me how to do it. I'm really not good at it. Lunch at apt 2005... we ate together... a lot. That day we cooked lunch (I think), and ate it outside at the picnic tables in our apt complex. Those were good times. We used to go back to Irvine and visit our apt complex because we had such good memories there.
<3,
Tiff
A much quieter day for us. Thankfully. :) June 10th was our 5 month wedding anniversary. :) I can't believe 5 months have already gone by. We were talking about it today and it's been the most eventful, most stressful, most challenging 5 months of our lives, but it's also been the most blessed and we've had the best time of our lives these past 5 months. We couldn't have been so blessed were it not for the challenges that we've endured and are still enduring and all of you definitely are a huge part of why we've been so blessed.
Updates and Prayer Requests
- Where are we going? Honestly, we're still living day by day and that goes for our hospital stay as well. Anderson had a low grade fever today which the case manager and the nursing consultant for Blue Cross say will buy us another day in the hospital. If the fever goes away, then we're going to have to leave. Kelly's found some places and the case manager is working with us to make sure that we get a bed in one of the facilities that Kelly and Kevin have approved. We're also going to be moving out of our apartment and into one that's closer to the SNF once we figure out where we're going. Lots more changes will happen soon. Try to hold off on sending cards and things to both our apt and hospital room until we figure out where we'll end up. We'd hate for your thoughts and encouragements to get lost. Be in prayer that we'll end up at the best place for us and that we'll also find a good apt to move into as well.
- Side effects of radiation - he's having a more difficult time swallowing (which they told us to expect after radiation), and some skin irritation that he says feels like a sunburn (which they also told us to expect). Pray for rejuvenating rest and healing for him.
- Neck tremors - today, he's had a lot more neck tremors than he usually does.. but he's also been able to move his neck more than he usually has been as well. The oncologist told us that it's probably a cerebellar issue. Please pray that the tumors would somehow shrink and go away. K. Just pray for complete healing. I think that's the best thing to ask for.
- Other issues: sodium's still low but it's stable at 129 (normal is 135-145ish), blood counts still low, still paralyzed, still has double vision, still has lesions in the cerebellum, T spine and L spine.
- Sleep - he's been taking some ambien at night to help him get to sleep faster. He's snoring right now. Sometimes he wakes himself up from his snoring. Pray for good, rejuvenating sleep.
- PT/OT were able to get him into a special wheelchair and we were able to get out of the hospital room again. :) This time was nicer. They came with us but they kinda left us alone here and there so we felt a little more like we were on our date. :P We sat at "the park" (which is a landmark at the hospital) and we listened to the volunteer play piano music for a while. Then he decided he wanted some sun but didn't want to go outside (it's hot and humid right now), so we sat at the sky bridge and I got us a smoothie and chick fil A from the cafeteria. We had a little snack/picnic in the sun on the sky bridge. Also ran into quite a few of our doctors on the sky bridge. Interesting. They were all happy to see him out and about though. PT/OT left the special wheelchair in our room and he said that we're definitely going outside again tomorrow, if we're still here.
Oh and I've also heard that some of you want to encourage us but don't know how, don't know what to say or do. You don't have to say anything magical... just be our friends. Be honest with how you feel because it makes us feel better knowing that you're hurting with us as well and not just trying to fix our pain or something like that. Update us on your lives... just be our friends. That's the best way to encourage us and help us feel "normal" again.
Pictures: Food. Anderson is a pretty good cook. I'm not a cook. I'm more of a baker. It kind of suits our personalities... cooking is more of an art and baking is more of a skill. He improvises, I follow directions. He also never measures. He's an eye-baller. Me... I like the measuring tools... cups, spoons, scales. I love using the leveler (hardware, not bakeware). I love making that little bubble sit steadily between the lines. The first time I saw a leveler I thought it was genius! OK anyway... back to the pictures. Anderson cooks shrimp... he loved to use paprika and parsley flake. He also used to make crepes a lot with his roommates in college. One day we decided to make this "1000 layer" crepe cake that we saw on food network. I think it was maybe only 20-30 crepes in our cake. He's also really good at flipping things in the pan. He tried to teach me how to do it. I'm really not good at it. Lunch at apt 2005... we ate together... a lot. That day we cooked lunch (I think), and ate it outside at the picnic tables in our apt complex. Those were good times. We used to go back to Irvine and visit our apt complex because we had such good memories there.
<3,
Tiff
Jun 13, 2009, 1:01:53 AM
to ipray4anderson
Hey all,
Just a quickie, which you all know is never really that quickie for me. I'm exhausted.
In case I haven't said it in a while, thank you so much for caring for us, praying for us, sending us emails, letters, care packages, and so much more. You have all been so wonderful to us. Thank you thank you thank you. :)
Prayer Requests
Anyway, just laying there and listening to music together... it almost felt like we weren't in a hospital. Maybe if you stand back a little, our room could be a one-room studio, we have housekeeping, room service, laundry service and access to quite an array of "sundries". The doc even ordered a big bottle of eucerin today for his dry skin. It's hard to remember life on the outside. It's always 71 degrees in here, which is a blessing since it's 95 and humid outside during the day in Houston. And we even have cable. Watched the Laker game yesterday. :)
We've really been so blessed.
Night everyone...
Tiff
Pictures:
Just a quickie, which you all know is never really that quickie for me. I'm exhausted.
In case I haven't said it in a while, thank you so much for caring for us, praying for us, sending us emails, letters, care packages, and so much more. You have all been so wonderful to us. Thank you thank you thank you. :)
Prayer Requests
- Where are we going? Mmm... still don't quite know but I think back to... what was it... Tuesday? When we thought insurance was going to kick us out of the hospital... well here we are at Saturday and I don't think we're gonna be leaving until Monday at the earliest, maybe Tuesday... who knows. The doc seemed pretty sure we'd have to be out ASAP, but the nurse practitioner and the case manager are making sure that we're not getting kicked out until we have a place to go afterwards. PTL.
- Possible sites: I found out today that Kelly had visited 15 different SNFs in the past week. She doesn't like to bother us with details, but today she told me that it's been a long hard road and it doesn't look good to go to a SNF because all the good ones are full, and the ones that aren't... well, there are just places that you would never want to send a loved one. So... that seemed pretty helpless. We had come full circle and decided to revisit rehab facilities. Anderson and I prayed a quick prayer that God would provide a place for us. And a few hours later, a rep from a place called HealthSouth came by. She told us that the facility would accept him, would give him a private room, visiting hrs aren't strict, I can spend the night with him... and she noticed I had a laptop so she mentioned that they do have wifi. Nice. The only thing that's holding them back is the insurance company approval. Be in prayer about that. Also, I asked our PT, but I should probably ask the nurse again, if rehab at the hospital will do a 2nd evaluation for Anderson to see if he'd be a candidate for rehab at MD Anderson. Should follow up on that tomorrow. Hopefully another doc will come. Found out that the previous doc who came was the department head. Eek.
- Fevers - come and go. I think I've noticed that he tends to get them when he's sleeping and when he's awake, his temp seems normal. Not quite sure tho. Also, the doc said that it's probably something to do with his spinal cord injury and that his body is having a hard time thermoregulating. No obvious infections... all blood and urine cultures are negative.
- Blood counts and Sodium - still low, but stable.
- Rest - still not sleeping all too well. He tends to be most awake at night. Late night to be precise. 2-4am. He's trying to sleep now. Hope he can, but I think he's still awake. Yess... he's still awake. The docs say he'll be exhausted from radiation for another week or so. He sleeps almost all day during the day. He's up for a few hours to eat and chat a little here and there, but then he's right back to taking a nap. Pray for more energy soon and good rest. He hates waking up. It's really miserable for him, especially when he's woken up by people barging in.
- PT/OT - our weekday therapist put him on the list for weekend therapy. They haven't come through historically, pray that he gets some therapy this weekend. We've been going "out" and sitting in the sun a bit for the past 3 days before today. He was too tired today, but maybe tomorrow. The therapist said that he was pretty impressed by his progress this past week. That's one of the reasons I'm hoping for a 2nd opinion from the rehab dept... maybe we'll get to stay here after all.
Anyway, just laying there and listening to music together... it almost felt like we weren't in a hospital. Maybe if you stand back a little, our room could be a one-room studio, we have housekeeping, room service, laundry service and access to quite an array of "sundries". The doc even ordered a big bottle of eucerin today for his dry skin. It's hard to remember life on the outside. It's always 71 degrees in here, which is a blessing since it's 95 and humid outside during the day in Houston. And we even have cable. Watched the Laker game yesterday. :)
We've really been so blessed.
Night everyone...
Tiff
Pictures:
- This is how he rolls - there are 2 ways to get out of the room. (1) the neuro chair - big, clunky, hard to maneuver, but easy to get in/out (2) the high back wheel chair - smaller, easier to maneuver, but difficult to get in/out and only the therapists have the confidence to do it. This is option #2. The chair is also kinda big for him so there's pillows propping him up everywhere. He's also pictured with his smoothie king smoothie. :)
- he tried to take a picture of us... - so we were trying to take a picture of us kissing. I have not attached those pics in case you all are grossed out by it. I tried 10 times and couldn't get us centered. He got kinda miffed at me and he said, "oh let me do it". This is the resulting picture. We had a pretty good laugh. Hope you do too.
- funny ND - we have this thing where we love to put pillows all around each other's heads so just the head is showing. Since we have access to seemingly unlimited pillows, we do it a lot in the hospital. This one is the funniest picture I took of his head. His facial expression and his hairdo (haven't washed or cut his hair in over 3 weeks) makes me happy and makes me laugh. Hope you guys are happy/laughing too.
Jun 14, 2009, 11:30:28 PM
to ipray4anderson
Hola everyone,
So Monday's the day... HealthSouth is going to contact Blue Cross and see if they'll approve Anderson's stay at this facility. If it's yes, then I guess we're going there. Kelly visited and said that they're pretty big on rehab there. Their gym is 3x the size of the one at MD Anderson and they even have a machine that gets people who can't walk to be upright and a machine moves their legs for them so they can do the walking motion as exercise/therapy. Sounds cool. Either way, wherever God provides for us will be the place that we need to be. Please be in prayer about the insurance and all for tomorrow. Thx. :) Anderson's also a little fearful about moving to a different hospital and starting serious rehab. He's afraid he won't be able to do it. Pray for courage and peace for him.
Also, tomorrow is likely going to be the day he starts chemo. They normally wouldn't start this kind of chemo (a drug that has a risk for bleeding/clotting) so soon after surgery, but since time isn't on our side, they've allowed it to be administered 3 weeks after surgery instead of 4 weeks to allow wound healing. Please pray that there would be no complications, especially bleeding complications, after tomorrow's infusion. The infusion is also given every 2 weeks so since we're still in the hospital, we can get it now and then figure out how to get him back to the hospital in 2 weeks... later. Initially, they thought we'd have to leave last Tuesday so it would have been a huge ordeal to get him back to the hospital for the infusion. Since we're still here, that dilemma is gone. Praise God. :)
Additional Prayer for:
I've been thinking a little bit about what to write when there's nothing big to report. All I can write to you all is the little changes that happen throughout the day and just continue the prayer requests that are ongoing. Maintenance.
Thoughts on Maintenance... sometimes I think that having housekeeping mop the floors everyday is a little excessive, but I'm glad that they do. They do a little bit of easy cleaning everyday so that a bunch of nastiness doesn't build up and create a huge job to clean. That reminds me of a little note I used to put above the sink at the apartment when I was living in Irvine. I'm sure my roommates thought I was OCD... and probably everyone else who came to visit as well... but had a yellow post-it note the shape of a star and on it I wrote "Please wipe down sink and mirror after every use. Thx!" I even put tape over the post-it so that it'd be semi waterproof. I'm absolutely sure that not everyone followed directions, but I recognized that cleaning off the water droplets while they were fresh, would save me time in the long run. Why? Because it would lengthen time between major cleanings because a few seconds of daily maintenance of a clean surface would prevent the hardwater buildup which requires major cleaning. I'm certain I've taken a picture of that post-it note somewhere, but I don't know where it is.
And I was thinking about "maintenance" when it comes to other aspects of life as well... and spiritual life. You definitely go to God when there's something major to pray for. But day to day... when nothing much happens... sometimes you think that maybe you can skip a day or two because things are still "clean". Maybe you CAN, but there's always little things... a spot here, a spot there... it all adds up and before you know it, the original surface is almost unrecognizable (or even changed colors), you need another major cleaning. Sometimes gunk has been there so long that it's really hard to remove now. If only it'd been wiped away while it was still fresh. Quick and easy.
So clean things up while they're still small and easy to clean. A little discipline in the short run will save you time and effort in the long run. I will have to remind myself of this constantly in the future. I tend to have a very messy desk/room and hold grudges for a really long time.
Thank you all for journeying with us. :)
<3,
Tiff
Fun things we did today:
So Monday's the day... HealthSouth is going to contact Blue Cross and see if they'll approve Anderson's stay at this facility. If it's yes, then I guess we're going there. Kelly visited and said that they're pretty big on rehab there. Their gym is 3x the size of the one at MD Anderson and they even have a machine that gets people who can't walk to be upright and a machine moves their legs for them so they can do the walking motion as exercise/therapy. Sounds cool. Either way, wherever God provides for us will be the place that we need to be. Please be in prayer about the insurance and all for tomorrow. Thx. :) Anderson's also a little fearful about moving to a different hospital and starting serious rehab. He's afraid he won't be able to do it. Pray for courage and peace for him.
Also, tomorrow is likely going to be the day he starts chemo. They normally wouldn't start this kind of chemo (a drug that has a risk for bleeding/clotting) so soon after surgery, but since time isn't on our side, they've allowed it to be administered 3 weeks after surgery instead of 4 weeks to allow wound healing. Please pray that there would be no complications, especially bleeding complications, after tomorrow's infusion. The infusion is also given every 2 weeks so since we're still in the hospital, we can get it now and then figure out how to get him back to the hospital in 2 weeks... later. Initially, they thought we'd have to leave last Tuesday so it would have been a huge ordeal to get him back to the hospital for the infusion. Since we're still here, that dilemma is gone. Praise God. :)
Additional Prayer for:
- Miracle of healing
- Radiation to be effective
- Tumors to shrink/not return
- Good sleep, esp sleep through the night
- Energy during the day
- No skin breakdown
- No infections
- Continue to have a good appetite
- Continued wound healing
- Return to normal levels of electrolytes and blood counts... and normal temperatures (no fevers)
- Peace and patience with himself and others
I've been thinking a little bit about what to write when there's nothing big to report. All I can write to you all is the little changes that happen throughout the day and just continue the prayer requests that are ongoing. Maintenance.
Thoughts on Maintenance... sometimes I think that having housekeeping mop the floors everyday is a little excessive, but I'm glad that they do. They do a little bit of easy cleaning everyday so that a bunch of nastiness doesn't build up and create a huge job to clean. That reminds me of a little note I used to put above the sink at the apartment when I was living in Irvine. I'm sure my roommates thought I was OCD... and probably everyone else who came to visit as well... but had a yellow post-it note the shape of a star and on it I wrote "Please wipe down sink and mirror after every use. Thx!" I even put tape over the post-it so that it'd be semi waterproof. I'm absolutely sure that not everyone followed directions, but I recognized that cleaning off the water droplets while they were fresh, would save me time in the long run. Why? Because it would lengthen time between major cleanings because a few seconds of daily maintenance of a clean surface would prevent the hardwater buildup which requires major cleaning. I'm certain I've taken a picture of that post-it note somewhere, but I don't know where it is.
And I was thinking about "maintenance" when it comes to other aspects of life as well... and spiritual life. You definitely go to God when there's something major to pray for. But day to day... when nothing much happens... sometimes you think that maybe you can skip a day or two because things are still "clean". Maybe you CAN, but there's always little things... a spot here, a spot there... it all adds up and before you know it, the original surface is almost unrecognizable (or even changed colors), you need another major cleaning. Sometimes gunk has been there so long that it's really hard to remove now. If only it'd been wiped away while it was still fresh. Quick and easy.
So clean things up while they're still small and easy to clean. A little discipline in the short run will save you time and effort in the long run. I will have to remind myself of this constantly in the future. I tend to have a very messy desk/room and hold grudges for a really long time.
Thank you all for journeying with us. :)
<3,
Tiff
Fun things we did today:
- washed Anderson's hair with the shampoo cap. Such a genius invention, I'm almost mad that the nurses didn't let us know it was an option earlier in our hospital stay. Today was the 2nd day in a row that we washed his hair. It's a shower cap with some shampoo/conditioning on the inside. You put it on your head, massage your head like you were shampooing, remove, towel dry, and style as usual. Awesome invention. Picture attached.
- played "name that jelly belly" game. He closed his eyes, I put a jelly belly in his mouth and he tried to guess the flavor. He only got 3 correct. It was fun. He tried to put one in my mouth, but he spilled the beans so I only got 1 chance to play the game.
- Kenneth and Clara brought us dumplings and kalbi. YUM. Kalbi. Bones removed too!
- We didn't get out of the room today, but we did yesterday. The night nurse even let us go out by ourselves. Unchaperoned date! We got our smoothie and watched the sun set behind the parking structure. Sunsets aren't so fabulous when you're far away from the beach, but it was a nice moment for us. One of those moments where you wish you could stop time and just be together right then and there a little while longer.
Jun 15, 2009, 12:40:28 PM
to ipray4anderson
Small update:
And thank you all, once again, for being so faithful and supportive of us. We love and miss all of you. Hope you're all doing well wherever you're at.
<3,
Tiff
Picture & Video:
- Haven't heard from HealthSouth yet. Seems like we're still OK to be here at the hospital so until then... we'll just take it day by day and see where we need to go.
- The chemo was approved by the insurance company (YES!) but Anderson's platelets are a little low. Too low for the doc to comfortably administer something that may cause bleeding. They've rechecked his platelets a little while ago, but we don't know the results yet. I don't think it will have improved drastically in 6-7 hours. We're probably going to have to wait a bit on the chemo.
- Although I thought I'd asked for a 2nd opinion regarding inpatient rehab at MD Anderson, the same doc came in with his same old agenda that he was trying to push. He walks in and before he even talks to you, he already knows what he's going to push and he's not going to listen to anything else. Since he's the dept head, I'm not sure much can be done for rehab at this hospital.
- There are some other facilities closer to the hospital that Kelly and the case manager are going to look into. HealthSouth is good, but they're a little far and we'd have to move apartments to be closer. If we could find a place that's nearer to MD Anderson, it would help put us all at ease (in case there's an emergency) and we'd also be saved from having to move. Either way, whatever God provides for us will be the best place for us. I don't worry about it, but I'm still asking for your prayers for it.
- Anderson had a little phlegm this morning. Hope it's not a lung infection. Pls be in prayer for that.
And thank you all, once again, for being so faithful and supportive of us. We love and miss all of you. Hope you're all doing well wherever you're at.
<3,
Tiff
Picture & Video:
- September 2006... he came back from Brazil and we went on a cruise soon after. That was when he started to feel dizzy, but we all thought he just had vertigo or some motion sickness from being on a plane and then a boat. I really just wanted him to suck it up and get better. I should never have thought that. My husband's not a weakling and he wouldn't complain about it unless it's really serious. Turned out to be a brain tumor in the cerebellum. Surgery #1 happened on 10/27/06. The cruise was happy times for us though. It was his first cruise experience. Whenever we experience or do something we've never done before, we call it a "debut"... but we call it a "dee-butt". We had fun in Houston because everything was new so we had all kinds of dee-butts here.
- Bowling video - we kind of poke fun at him for his slightly strange bowling form. But no one can really say anything when whatever he does gets him strike after strike. I think at his peak, he was averaging 180's and at least one 200 game every time we went. His highest EVER was 279. That was one spare on the first frame, all strikes and one 9 at the very end of the 10th.
Jun 15, 2009, 11:05:16 PM
to ipray4anderson
Another small update:
Night night and please be in prayer for us about the big move tomorrow...
<3,
Tiff
- HealthSouth is a go... but it's now become a backup. Insurance approved Anderson for transfer to a LTAC... a long term acute care facility. This works better for us than a SNF because they also do rehab there. We've heard from a few PT's and docs that Anderson's a little too "spry" for the SNFs. We'll see how it goes. Kelly's going to try to see if Kindred, another LTAC much closer to our apt and the hospital, will accept him. She's going to have to try to work it all out tomorrow early AM otherwise we're going to HealthSouth, which is not a shabby choice either. PTL for God's provision and for closing all the doors to the SNFs and leading us to LTACs.
- I don't think it's a coincidence that just today Anderson's platelets became too low to do chemo. Perhaps God's got something else planned for us. We'll have to see. Anderson's dad found a Chinese herbalist with some promising... promises. It's all in Chinese and the google translator does a bad job of translating... but it kind of sounds like the same type of thing we did prior to coming to Houston.. detox and cell strengthening herbs with a clean, healthy diet. We're still looking into it, but I think that it's something we're going to try in the meantime.
- All the previous health conditions are still present: low sodium, low platelets, low WBC's, some random irregularities in his labs... also he's been hot and cold today, but no fever, infectious disease docs came and had nothing new to report... just switching IV antibiotics to oral... mmm... that's about it.
- Baseball/softball has played a fairly large role in our relationship. We started to hang out a lot because of IM softball, went to play catch, batting cages... hung out before/after games. We used to frequent the batting cages at the Boomers in Irvine and also a few in our area here and there. We used to have batting gloves in the glove compartment just in case we felt like going to the batting cages. One day after we had kind of a big fight, I went and bought myself a new baseball glove. I don't really know why... I just felt like I wanted one and I was upset and I bought it. Who knows what kind of stuff I'd bring home if I were angry more often... and yes, I often bring home strange things even though I'm not out on shopping therapy. OH, I know why I bought it. I didn't need a new glove AND it makes Anderson upset when I buy things that are not necessary.
- Our bench on Balboa Island... I used to live on Balboa Island and one day Anderson came over to hang out... before we were dating. We walked around the Island and ended up sitting down on this bench. He was telling me about what he was going to do after graduation... about how he had plans to go to culinary school and how he looked into the FBI and how he wanted to work for the U.N. but that he was going to make his parents happy by going to Brazil to work at the family business. I was sort of zoning out here and there during the conversation, but it hit me that Anderson was a good person. So I said, "Anderson, you're a good person." It was kind of a "moment" for us. One of those that you stop and remember. Every time we go to Balboa Island, we sit on our bench for a little bit.
Night night and please be in prayer for us about the big move tomorrow...
<3,
Tiff
Jun 16, 2009, 10:57:11 PM
to ipray4anderson
Hi Everyone,
Changes! Anderson was discharged from MD Anderson and admitted to Kindred which is only a couple blocks away from MD Anderson. We realize now how spoiled we were with MD Anderson and even UCLA... There's a lot of things I'll miss about MD Anderson (especially the volunteers and the services they provide) but we're gonna make the most/best with where we're at and what we've been given and everything will be OK.
Right now, Anderson's at the Kindred on Main St, room 503. We'll have to see how it goes tomorrow once he starts doing therapy and all, but he got the same special air mattress bed he had at MD Anderson so hopefully he'll get good rest here. He's snoring right now. That makes me happy. My little cot here, however is SUPER noisy whenever I move. I hope I don't wake him up during the night.
Prayer Requests
<3,
Tiff
Changes! Anderson was discharged from MD Anderson and admitted to Kindred which is only a couple blocks away from MD Anderson. We realize now how spoiled we were with MD Anderson and even UCLA... There's a lot of things I'll miss about MD Anderson (especially the volunteers and the services they provide) but we're gonna make the most/best with where we're at and what we've been given and everything will be OK.
Right now, Anderson's at the Kindred on Main St, room 503. We'll have to see how it goes tomorrow once he starts doing therapy and all, but he got the same special air mattress bed he had at MD Anderson so hopefully he'll get good rest here. He's snoring right now. That makes me happy. My little cot here, however is SUPER noisy whenever I move. I hope I don't wake him up during the night.
Prayer Requests
- New doctors, follow-up with the docs at MD Anderson. Pray that our new doc will be a good one. The night nurse said that he's great. Hope so! We meet him tomorrow. There's also some coordinating that needs to be done so that MD Anderson can keep track of his labs and how he's doing. Hope that goes smoothly. His special bed arrived a couple hours late, but it did arrive. The medications have also changed so now I'll have to famliarize myself with the new ones.
- Same health stuff - paralysis & everything that goes along with it, electrolytes to normalize or at least be stable, white cells and especially platelets to increase (they dropped even lower today), tumors to shrink, no infections, no pain, continued healing of his surgical incision, good pee/poo, dry skin to get better...
- Temperature - the doc said that his body isn't regulating his temperature very well anymore so pray that we can keep him as comfortable as possible. He gets hot sometimes... needs to take the blankets off... then cold sometimes so it's time to put them back on. It's not a HUGE deal, but it does make him uncomfortable.
- Adjustment to the new place
- For him to be in good spirits. He doesn't like change much and he tends to judge a lot of things before giving them a chance.
- Good nurses - I hope they're good here...
<3,
Tiff
Jun 17, 2009, 10:09:36 PM
to ipray4anderson
Hi all,
In the bustle (I won't say hustle because it didn't go all that quickly) of moving from MD Anderson to Kindred Hospital (6441 Main Street, Houston, TX 77030 room 503), I forgot to mention that one year ago yesterday Anderson and I got engaged. :D I can't believe that was a year ago and I really can't believe everything that's happened since then. 2 brain surgeries, a spine surgery, the 10 day trip which turned into 3+ months in Texas... and most of all, his rehab/recovery here in TX and then the rapid deterioration of his condition leading to paraplegia almost a month ago.
Since the hospital is so close to MD Anderson, we won't need to move to a different apartment complex, but we will be moving to different apartments within the same complex to better meet our needs here. The move will likely happen next week or so. I will send out the new address with the new apartment number when we know where we're moving. It will still be at 2255 Braeswood Park Drive #XXXX, Houston, TX 77030. I did try to fill out a change of address form the last time we moved apartments, but it totally didn't work. Dunno what happened with that. It would just be easier for everyone to wait on the new address before sending things... Thank you!
A little bit about Kindred Hospital... it's only 6 floors total and there are only patients on floors 2-5 but the 4th floor is closed for remodeling. It's a little bit older and you can tell from their regular beds, their furniture, and their IV pumps especially, but it's not like everything's falling apart or anything like that. Visiting hours are very flexible and here's a huge perk... there's FREE PARKING!!! If you visited us at MD Anderson, you KNOW that parking's a little bit steep there. Since it's a small hospital, they don't have a gift shop and their cafeteria only serves food from 12-1:30pm but it's really inexpensive. 50 cents for a hot dog or something like that. The cafeteria room itself is open 24 hours with the vending machines and there's free coffee available there, but I can't vouch for its quality. Many of the doctors are contracted from other hospitals in the medical center, but there is always a few docs at the hospital at all times... I think. As far as I can tell so far, the nursing staff has been very kind, some might be a little rough around the edges but they do everything right and they're safe. If there are any emergencies, they've let us know that they will send Anderson by ambulance to get help. Transportation to and from here will likely be by ambulance. It's safer for everyone.
I have some time to write an update earlier today because the sleeping med they gave him really worked last night so he's awake more now during the day. His parents are chatting while massaging him now.
Prayer Requests:
Pictures:
<3,
Tiff
In the bustle (I won't say hustle because it didn't go all that quickly) of moving from MD Anderson to Kindred Hospital (6441 Main Street, Houston, TX 77030 room 503), I forgot to mention that one year ago yesterday Anderson and I got engaged. :D I can't believe that was a year ago and I really can't believe everything that's happened since then. 2 brain surgeries, a spine surgery, the 10 day trip which turned into 3+ months in Texas... and most of all, his rehab/recovery here in TX and then the rapid deterioration of his condition leading to paraplegia almost a month ago.
Since the hospital is so close to MD Anderson, we won't need to move to a different apartment complex, but we will be moving to different apartments within the same complex to better meet our needs here. The move will likely happen next week or so. I will send out the new address with the new apartment number when we know where we're moving. It will still be at 2255 Braeswood Park Drive #XXXX, Houston, TX 77030. I did try to fill out a change of address form the last time we moved apartments, but it totally didn't work. Dunno what happened with that. It would just be easier for everyone to wait on the new address before sending things... Thank you!
A little bit about Kindred Hospital... it's only 6 floors total and there are only patients on floors 2-5 but the 4th floor is closed for remodeling. It's a little bit older and you can tell from their regular beds, their furniture, and their IV pumps especially, but it's not like everything's falling apart or anything like that. Visiting hours are very flexible and here's a huge perk... there's FREE PARKING!!! If you visited us at MD Anderson, you KNOW that parking's a little bit steep there. Since it's a small hospital, they don't have a gift shop and their cafeteria only serves food from 12-1:30pm but it's really inexpensive. 50 cents for a hot dog or something like that. The cafeteria room itself is open 24 hours with the vending machines and there's free coffee available there, but I can't vouch for its quality. Many of the doctors are contracted from other hospitals in the medical center, but there is always a few docs at the hospital at all times... I think. As far as I can tell so far, the nursing staff has been very kind, some might be a little rough around the edges but they do everything right and they're safe. If there are any emergencies, they've let us know that they will send Anderson by ambulance to get help. Transportation to and from here will likely be by ambulance. It's safer for everyone.
I have some time to write an update earlier today because the sleeping med they gave him really worked last night so he's awake more now during the day. His parents are chatting while massaging him now.
Prayer Requests:
- Rehab - PT and OT came by today to do their assessment. PT's going to work on his range of motion for his legs and transferring techniques. OT's going to work on his arms and rebuilding his strength there. They plan on doing therapy everyday of the week with breaks on weekends. After 2 weeks, they'll reassess and decide what to do next. Pray that he takes well to the therapy. He's still afraid that he won't be able to do therapy.
- PTL - his sodium's 130 today! It hasn't been 130 in weeks! It's still not normal but it's going up hopefully. :) Platelets are only a few points lower today than yesterday, which is good because it's been dropping 10-15 a day since last week. Hopefully it'll plateau and then go back up. They told us the red blood cells are OK, white cells had plateau'd and are going up a little, they're just waiting to see what the platelets do. Keep praying! He also hasn't been too hot or too cold which is awesome. Hopefully it stays like that. He got GOOD rest last night. He said he hadn't slept like that in weeks. Yay for Zyprexa!
- Phlegm & cough - when he wakes up in the mornings, he has some phlegm which he has a hard time clearing. Hope it resolves and hope he can work on his coughing so he can get stuff out. Pls pray about that.
- Overall improvement in his health, no infections, and that I would also get good rest and won't get sick.
- To make the most out of every day. We're still happy every day for another day together. Pray that we'll make good memories together.
Pictures:
- Engagement Day - We'd found out a month or so earlier that his tumor had started growing back (1st recurrence) and we were pretty sad those days. Anderson proposed and turned our frowns upside down. Mourning into dancing. :)
- Beach in Carpinteria - a week after we got engaged, Anderson started doing some major complementary therapy at a place called the Issels Clinic in Santa Barbara/Carpinteria. They did things like hyperbaric oxygen, sauna, acupuncture, massage, IV vitamin infusions, major supplements, detox stuff, and recommended a completely organic diet with mostly veggies, very very few carbs, no dairy, no sweets... pretty rough. He was only able to do that for a week and a half before he started feeling extremely dizzy and then UCLA had to schedule a surgery as soon as they could. Since they were just opening the new hospital, they scheduled his surgery for July 31, 2008. I drove up to Carpinteria to visit him for a day between classes. It was a pretty long drive for me, but worth it. It made us both really happy to be together, even for just a day there. We went to visit the beach. I remember he was pretty dizzy but we still enjoyed going out. It was beautiful there. We said that we'd like to go there again, but not for therapy. Maybe...
<3,
Tiff
Jun 19, 2009, 2:46:34 PM
to ipray4anderson
Hey there friends and family,
SERIOUSLY, never a dull moment for Tifferson.
Some of you may have gotten an emergency prayer request email, text, or something regarding Anderson's surgical incision this morning/afternoon. I just wanted to update everyone on what happened.
We started the morning a little bit on the lazy side today. We got up around 8, I fed him breakfast (he really enjoys the food here btw...) and then both of us kind of wandered/drifted back to sleep. At around 11, I got up pretty reluctantly to get Anderson's herbal drink ready for him. He has to drink it on an empty stomach and wait an hour before he eats so I figure if he drank it at 11, he'd be able to eat lunch at 12. So we did the herb thing, he brushed his teeth to get the taste out and then we were trying to find him a comfortable position in bed. I checked the time... 11:30am so he could eat again at 12:30. We sat him up in bed and were kind of shifting him (not roughly AT ALL) to find a good spot when he said "ow!" My heart jumped. He doesn't usually have pain. So I turned him a bit to get a peek at his surgical incision and it had popped open. The scar is about 6 inches long along his spine in his neck area; I'd say about 3 inches popped open about an inch wide. And it was bleeding. I wouldn't say hemorrhaging, but blood was pouring out. We had the nurse give us a printout of his morning labs today and I knew his platelets were 48 today... normal would be 150 or so. Platelets are what help the blood clot so low platelets meant that he could bleed a lot. I turned him back and I threw open the door, ran down the hallway and asked (more like demanded help). I'm actually surprised I was thinking pretty clearly. The first person who came in was RT (respiratory). He took a look and sent for more help while he took his pulse and oxygen saturation and tried to keep everyone calm. I was freaking out inside. Someone else came in, really calmly and slowly (the wound nurse) and she took a look and was like "oh ok" and walks out calmly. At this point I'm feeling like I'm about to throw up. I ran down the hallway after the wound nurse and I wanted to ask her what was going to happen next, if they were going to call an ambulance, get a doctor to come in, get help... or WHAT. She was just calmly looking for the chart, didn't make eye contact with me. There were two doctors sitting at the computers typing away and a receptionist on the phone. Someone came and told me they were going to go find his nurse and I kinda told him, "NO, I don't want a nurse, I want a doctor or SOMEONE to come in and DO something about it. Something needs to happen and it needs to happen fast, his platelets are 48 today." I ran back to the room, put my head between my knees and prayed. I went to Anderson, held his hand with my left hand and put my right hand on his forehead and we prayed again. He knew I was freaking out but trying to be calm. He said, "it's OK. I'm tired of all of this. Whatever happens, I love you." I told him I loved him too. And then I shared with him something that was on my mind. I'm going through Job and one of the things that he said after he found out that all his children had been killed, his livelihood stolen, burned, and destroyed... was that God gives, God takes away, Blessed be the name of the Lord. (1) God gives, (2) God takes away (3) Blessed be the name of the Lord. So I said it and Anderson repeated it. He said it a few times and then he forgot #3 so I started singing Blessed Be the Name of the Lord to him so he would remember. And he remembered. We sang together for a little bit before more people came in. I forget when, but somewhere in the commotion, I did call Kelly, my dad, texted Steve, texted Twitter, called MD Anderson emergency and got put on hold so I hung up on them and called the neuro clinic directly and had his neurosurgeon paged. The nurse practitioner called me back and left me the pager number of the neurosurgeon on call and also her pager in case I or the doctors at Kindred needed to get a hold of them. The wound nurse came in and packed the wound. Anderson's doctor at Kindred was also here in 5 minutes and he came up to take a look. The doctor reassured us that this was fairly normal and not to worry. By the time he came in, it had stopped bleeding. He took a look and said that there was fluid buildup at the surgical site and that it had just popped open and drained out. The wound nurse said that she's had one pop open in her face once. Ew. The doctor said that the wound couldn't be sutured back up, that it would have to heal from the bottom of the wound out to the surface of the skin. He said that he could move around, even get up in the chair if he wanted to. They told me how to do wound care in case I had to (they know I'm a nurse) and then the doc went to talk to the neurosurgeon. Relief. OMG. I looked at the clock and it was 12:30. He could eat lunch. So that's what we did.
He even did occupational therapy in bed today. A few friends flew in from CA and Kenneth (Houston friend) also came by to visit. There was free lunch in the cafeteria so I went down to eat lunch because Anderson didn't like his meatloaf so I gave him my fish lunch instead. Kelly fed him the rest of lunch, I went down to eat, when we were taking the elevator back up, we ran into our friends from CA and went to the room together. Had some chit chat, he did a face mask (picture attached), and now he's resting.
Whew! What a day.
I'll write more later. Just wanted to send you guys a more detailed update.
<3,
Tiff
SERIOUSLY, never a dull moment for Tifferson.
Some of you may have gotten an emergency prayer request email, text, or something regarding Anderson's surgical incision this morning/afternoon. I just wanted to update everyone on what happened.
We started the morning a little bit on the lazy side today. We got up around 8, I fed him breakfast (he really enjoys the food here btw...) and then both of us kind of wandered/drifted back to sleep. At around 11, I got up pretty reluctantly to get Anderson's herbal drink ready for him. He has to drink it on an empty stomach and wait an hour before he eats so I figure if he drank it at 11, he'd be able to eat lunch at 12. So we did the herb thing, he brushed his teeth to get the taste out and then we were trying to find him a comfortable position in bed. I checked the time... 11:30am so he could eat again at 12:30. We sat him up in bed and were kind of shifting him (not roughly AT ALL) to find a good spot when he said "ow!" My heart jumped. He doesn't usually have pain. So I turned him a bit to get a peek at his surgical incision and it had popped open. The scar is about 6 inches long along his spine in his neck area; I'd say about 3 inches popped open about an inch wide. And it was bleeding. I wouldn't say hemorrhaging, but blood was pouring out. We had the nurse give us a printout of his morning labs today and I knew his platelets were 48 today... normal would be 150 or so. Platelets are what help the blood clot so low platelets meant that he could bleed a lot. I turned him back and I threw open the door, ran down the hallway and asked (more like demanded help). I'm actually surprised I was thinking pretty clearly. The first person who came in was RT (respiratory). He took a look and sent for more help while he took his pulse and oxygen saturation and tried to keep everyone calm. I was freaking out inside. Someone else came in, really calmly and slowly (the wound nurse) and she took a look and was like "oh ok" and walks out calmly. At this point I'm feeling like I'm about to throw up. I ran down the hallway after the wound nurse and I wanted to ask her what was going to happen next, if they were going to call an ambulance, get a doctor to come in, get help... or WHAT. She was just calmly looking for the chart, didn't make eye contact with me. There were two doctors sitting at the computers typing away and a receptionist on the phone. Someone came and told me they were going to go find his nurse and I kinda told him, "NO, I don't want a nurse, I want a doctor or SOMEONE to come in and DO something about it. Something needs to happen and it needs to happen fast, his platelets are 48 today." I ran back to the room, put my head between my knees and prayed. I went to Anderson, held his hand with my left hand and put my right hand on his forehead and we prayed again. He knew I was freaking out but trying to be calm. He said, "it's OK. I'm tired of all of this. Whatever happens, I love you." I told him I loved him too. And then I shared with him something that was on my mind. I'm going through Job and one of the things that he said after he found out that all his children had been killed, his livelihood stolen, burned, and destroyed... was that God gives, God takes away, Blessed be the name of the Lord. (1) God gives, (2) God takes away (3) Blessed be the name of the Lord. So I said it and Anderson repeated it. He said it a few times and then he forgot #3 so I started singing Blessed Be the Name of the Lord to him so he would remember. And he remembered. We sang together for a little bit before more people came in. I forget when, but somewhere in the commotion, I did call Kelly, my dad, texted Steve, texted Twitter, called MD Anderson emergency and got put on hold so I hung up on them and called the neuro clinic directly and had his neurosurgeon paged. The nurse practitioner called me back and left me the pager number of the neurosurgeon on call and also her pager in case I or the doctors at Kindred needed to get a hold of them. The wound nurse came in and packed the wound. Anderson's doctor at Kindred was also here in 5 minutes and he came up to take a look. The doctor reassured us that this was fairly normal and not to worry. By the time he came in, it had stopped bleeding. He took a look and said that there was fluid buildup at the surgical site and that it had just popped open and drained out. The wound nurse said that she's had one pop open in her face once. Ew. The doctor said that the wound couldn't be sutured back up, that it would have to heal from the bottom of the wound out to the surface of the skin. He said that he could move around, even get up in the chair if he wanted to. They told me how to do wound care in case I had to (they know I'm a nurse) and then the doc went to talk to the neurosurgeon. Relief. OMG. I looked at the clock and it was 12:30. He could eat lunch. So that's what we did.
He even did occupational therapy in bed today. A few friends flew in from CA and Kenneth (Houston friend) also came by to visit. There was free lunch in the cafeteria so I went down to eat lunch because Anderson didn't like his meatloaf so I gave him my fish lunch instead. Kelly fed him the rest of lunch, I went down to eat, when we were taking the elevator back up, we ran into our friends from CA and went to the room together. Had some chit chat, he did a face mask (picture attached), and now he's resting.
Whew! What a day.
I'll write more later. Just wanted to send you guys a more detailed update.
<3,
Tiff
Jun 20, 2009, 10:55:45 AM
to ipray4anderson
Okaay more updates. :)
I had a hard time sleeping last night. I kept imagining him bleeding out or something and then I wouldn't find out until morning when he wouldn't answer me. I was more calm when I could hear him snoring. When he wasn't snoring, I'd stare at him to see if I could see his chest moving. If I couldn't tell, I'd grab his hand and feel for a pulse. I know I know... I'm hovering. I just don't want to miss any silent surprises. The other time he really scared me was when he was listening to mp3's with his headphones, his eyes were open, staring up at the ceiling, but I was calling him and he didn't respond. I yanked out his headphones, shook him and said "CAN YOU HEAR ME?!?". He said, "sorry, the volume was too loud."
Scared me half to death.
He's also really tired this morning. Normally, he's waking ME up to get his breakfast ready at 7 or 8, but it's already 10:30 and he still wants to sleep. It's Saturday so no therapy today and the PA (physician's assistant) already came so I don't think there will be too many more interruptions. Oh, except for the chest xray. He's also kind of agitated. He sort of gets mad at everyone who comes in. Just one of those grumpy days.
Prayer Requests
I haven't had too too many thoughts to share. I've been reading through this little book called "Hope for Hurting Hearts" by Greg Laurie that my aunt sent us. It's like he took the words right out of my mouth and said them better... with lots of cool quotes, stories, illustrations and Bible verses thrown in there too.
Some things I can share are from our short conversations together throughout the day. Yesterday, I can't really remember when, but definitely after the whole surgical site fiasco, Anderson told me that being in the hospital makes him see and appreciate things differently than before. He's said the same thing before, but yesterday we were talking about how it seems like we were made for something else... not for this world. He said he couldn't quite put his finger on it, but there's something that this world can't satisfy. So I shared with him the C.S. Lewis quote:
As long as I'm alive in this body, there is good work for me to do. If I had to choose right now, I hardly know which I'd choose. Hard choice! The desire to break camp here and be with Christ is powerful. Some days I can think of nothing better. But most days, because of what you are going through, I am sure that it's better for me to stick it out here. So I plan to be around awhile, companion to you as your growth and joy in this life of trusting God continues. You can start looking forward to a great reunion when I come visit you again. We'll be praising Christ, enjoying each other.
He does feel torn. He's so tired of having to deal with his failing body. When I feel selfish, I want him to stay... in whatever way, shape or form. But if I look at him and just try to be as selfless as I can be... I know that he's suffering. He doesn't feel like this is his body anymore and he feels so trapped. Maybe it's like trying to photoshop on a 10-year-old computer. It's just so slow and getting slower and slower. You look fwd to that day sometime soon when you'll get the new computer, super fast, with the newest programs and a whole bunch of lightning fast memory. K, going to heaven will be infinitely better than that, but it's what I could think of right now. So he's sticking with the old computer as long as he can for us because the rest of us aren't ready to let go yet. I think that's how he feels. Of course, he still prays for a miracle too.
Our conversations nowadays tend to be pretty short. He's so tired. Once in a while we have a really good one.
Chest xray came and went. Wound nurse is coming soon.
Update 12:30 - wound care came and went. She did say that it was saturating pretty quickly. They think that he'll have a woundvac on Monday and she put an extra pad on top of the dry dressing and that'll hopefully last until tomorrow. She did say that everything looked good, no signs of infection or necrosis. Just hope it stops bleeding.
talk to you all later...
Tiff
Pictures:
I had a hard time sleeping last night. I kept imagining him bleeding out or something and then I wouldn't find out until morning when he wouldn't answer me. I was more calm when I could hear him snoring. When he wasn't snoring, I'd stare at him to see if I could see his chest moving. If I couldn't tell, I'd grab his hand and feel for a pulse. I know I know... I'm hovering. I just don't want to miss any silent surprises. The other time he really scared me was when he was listening to mp3's with his headphones, his eyes were open, staring up at the ceiling, but I was calling him and he didn't respond. I yanked out his headphones, shook him and said "CAN YOU HEAR ME?!?". He said, "sorry, the volume was too loud."
Scared me half to death. He's also really tired this morning. Normally, he's waking ME up to get his breakfast ready at 7 or 8, but it's already 10:30 and he still wants to sleep. It's Saturday so no therapy today and the PA (physician's assistant) already came so I don't think there will be too many more interruptions. Oh, except for the chest xray. He's also kind of agitated. He sort of gets mad at everyone who comes in. Just one of those grumpy days.
Prayer Requests
- The surgical wound - his saturated dressing (exterior to the gauze-packed wound) had to be changed 3 times in 12 hours. I'm not sure, but it sounded like a lot to me. I tried asking the night nurse to check to see if it was too much drainage but I really don't think she understood any of the words coming out of my mouth. Also, I think she was a newbie because every time I asked her something, she had to go ask her supervisor to come in and double check. I'm hoping I'll get to talk to the wound nurse today and that the "weeping" of blood (as she calls it) is not excessive. His platelets are 42 today. They were 48 yesterday. I hope they start to go up soon. Also pray for no infections.
- Phlegm - the phlegm hasn't gotten any better, in fact, he's been clearing his throat much more often now than he used to. I don't think he can cough unless his gag reflex is stimulated. The PA is ordering something, which I think sounded like mucinex but not exactly (I found out later that it's muco-mist?), to possibly help and also a chest xray to see if his lungs are clear. Pray for that. Hospital air is pretty dry and cold.
- The "usual" - the immobility and all the problems that comes with, good pee/poo, temperature regulation, good appetite, sodium and other labs (especially blood counts) to improve (sodium's hanging out in the low 130's... much better than in the 120's), no infections, energy, good rest, maintain good lung expansion, no pressure ulcers, for him to be comfortable and for all of us to enjoy each other's company.
- A miracle. Sometimes, I feel like continuing to ask for a miracle seems kind of redundant, but the more time goes by, the more I realize that it's the only thing that can save him now. There really isn't too much else the doctors can do and I still remind myself of that Gideon story where God keeps telling him to send large chunks of his army home so that when God gives them victory, they can't say that they had any part in it and all glory goes to God. I'm still hoping for that. And I keep reminding myself about what "time" it is. Not the time it says on the clock, but if there's a time for everything, a season for everything under heaven, a time to laugh, a time to cry, etc... right now is the time to pray pray pray and laugh and talk to each other. It's not a time to dwell on the past, to be frustrated at our limitations, to wish things were different... it's a time to remind ourselves of all the ways we've been blessed, to make the most out of what we've been given, and to make the most out of every single day we still enjoy together. There's plenty of time to be sad when it's time to be sad. Now's not the time.
I haven't had too too many thoughts to share. I've been reading through this little book called "Hope for Hurting Hearts" by Greg Laurie that my aunt sent us. It's like he took the words right out of my mouth and said them better... with lots of cool quotes, stories, illustrations and Bible verses thrown in there too.
Some things I can share are from our short conversations together throughout the day. Yesterday, I can't really remember when, but definitely after the whole surgical site fiasco, Anderson told me that being in the hospital makes him see and appreciate things differently than before. He's said the same thing before, but yesterday we were talking about how it seems like we were made for something else... not for this world. He said he couldn't quite put his finger on it, but there's something that this world can't satisfy. So I shared with him the C.S. Lewis quote:
"All the things that ever deeply possessed your soul have been hints of heaven. Tantalizing glimpses, promises never quite fulfilled, echoes that died away just as they caught your ear... If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is I was made for another world...Earthly pleasures were never meant to satisfy, but to arouse, to suggest the real thing."
He seemed to like that. I think that he's kind of getting to the point where he's looking forward to heaven. In another conversation, I was sharing with him the passage where Paul says that "for to me, to live is Christ and to die is gain." Here is that same passage (Philippians 1) from The MessageAs long as I'm alive in this body, there is good work for me to do. If I had to choose right now, I hardly know which I'd choose. Hard choice! The desire to break camp here and be with Christ is powerful. Some days I can think of nothing better. But most days, because of what you are going through, I am sure that it's better for me to stick it out here. So I plan to be around awhile, companion to you as your growth and joy in this life of trusting God continues. You can start looking forward to a great reunion when I come visit you again. We'll be praising Christ, enjoying each other.
He does feel torn. He's so tired of having to deal with his failing body. When I feel selfish, I want him to stay... in whatever way, shape or form. But if I look at him and just try to be as selfless as I can be... I know that he's suffering. He doesn't feel like this is his body anymore and he feels so trapped. Maybe it's like trying to photoshop on a 10-year-old computer. It's just so slow and getting slower and slower. You look fwd to that day sometime soon when you'll get the new computer, super fast, with the newest programs and a whole bunch of lightning fast memory. K, going to heaven will be infinitely better than that, but it's what I could think of right now. So he's sticking with the old computer as long as he can for us because the rest of us aren't ready to let go yet. I think that's how he feels. Of course, he still prays for a miracle too.
Our conversations nowadays tend to be pretty short. He's so tired. Once in a while we have a really good one.
Chest xray came and went. Wound nurse is coming soon.
Update 12:30 - wound care came and went. She did say that it was saturating pretty quickly. They think that he'll have a woundvac on Monday and she put an extra pad on top of the dry dressing and that'll hopefully last until tomorrow. She did say that everything looked good, no signs of infection or necrosis. Just hope it stops bleeding.
talk to you all later...
Tiff
Pictures:
- We love BK! Our nephew, Brandon Kwock, was born right around the time that we found out Anderson's tumor had grown back. All of our great joys in our lives seem to be accompanied by great sorrow. BK's born/tumor recurrence #1, engagement/tumor getting worse/going to surgery, wedding/tumor recurrence #2, spinal metastases/spine surgery/deepening of our relationship with each other and God. God really does turn our mourning into dancing, our frowns upside down... Maybe it makes our joy all that more powerful because we know how precious it is when there is an equally sorrowful event happening at the same time.
- We had a dinner at my parents' house right before we left for Houston back in March 09. I like this picture because everyone's smiling and it has both my family and Anderson's family in it. Thanks, Ted, for photographing us and for making funny noises soBrandon would laugh!
Jun 22, 2009, 10:46:53 PM
to ipray4anderson
Hi everyone,
No hugely exciting events since the surgical scar popping open. Thank God for that. There were a few mishaps today...I found out the bed was malfunctioning, I called Hill-Rom myself to schedule maintenance, he came, changed out the mattress, foley leaked and had to have that changed... he had PT and OT (which I timed today... OT was 15 minutes and PT was 10 minutes...) and it's 8pm and we still haven't seen the doctor, the bath team never came so the nurse and I bathed him after she changed the foley, and wound care never came because they were waiting on the doctor before putting in the wound vac. Even Hematology/Oncology came and even though MD Anderson requested an order for a platelet transfusion around 2pm, they're putting it off until tomorrow. I'm glad that at least the bed got fixed.
Prayer Requests:
I didn't have the greatest day today. I woke up not really feeling good, felt like throwing up after lunch, was really tired all day. I feel better now. Not really sure what it is. I also have an allergic reaction to the cream or whatever they used on my chest from the facial yesterday. Might have been some mango or something in whatever they used. It feels like a mango rash, but I don't really remember because I haven't had one since Jr. Hi when I figured out I was allergic to mangoes...and mango lotion. Also broke out a little from the threading. I broke out the last time I threaded too... uhm... the last time I threaded was like sophomore year in college... woah like 6-7 years ago. Anyway. Anderson had a hard morning too... I think today, I just ran out of things to say.
The day ended well though. Anderson usually wakes up more at nights. We were able to chat a bit and pray together too. I like the nights when I can climb in his bed and we just chat and I tell him what I'm feeling and he always makes me feel better. It's now 12:30am. As you can see, it takes me almost all night to write these updates. I think I started this one at 8pm.
I push my cot right up next to his bed so that we can hold hands at night as we fall asleep. We always used to do that when we slept in the same bed. He tells me that at night sometimes, my hand goes looking for his hand while I'm sleeping. And sometimes when he wakes up in the middle of the night (which was pretty common b/c he's a light sleeper and he says I breathe hard when I'm asleep), he finds my hand and my fingers close around his... even when I'm sleeping. It's one of our "things". It's one of the biggest things I miss about not being able to sleep next to him.
Anderson says that I need to sleep right now so I can wake up with him to eat breakfast together. He pretty much lives for food. It makes me excited to see him excited. Tonight for dinner, he had Macaroni and Beef (which looked a whole lot like hamburger helper). When it came, he asked me to show it to him and he said "oooh". We had to clean him up a little (because of the busted foley) before he ate... and since the bath team never came, I decided to give him the bath at the same time. While he was waiting to eat, he kept telling me, "the noodles look so good. I'm going to be disappointed if they don't taste good". It was really cute. He ended up liking it. He ate all his hamburger helper, garlic mashed potatoes, cabbage, cream of mushroom soup, iced tea and a big ol' slice of yellow cake with white frosting and rainbow sprinkles on top. Oh, and applesauce. I'm really glad he likes the food here. I'd better get to bed now so I'll be awake for breakfast tomorrow.
Goodnight all!
<3,
Tiff
Pictures
No hugely exciting events since the surgical scar popping open. Thank God for that. There were a few mishaps today...I found out the bed was malfunctioning, I called Hill-Rom myself to schedule maintenance, he came, changed out the mattress, foley leaked and had to have that changed... he had PT and OT (which I timed today... OT was 15 minutes and PT was 10 minutes...) and it's 8pm and we still haven't seen the doctor, the bath team never came so the nurse and I bathed him after she changed the foley, and wound care never came because they were waiting on the doctor before putting in the wound vac. Even Hematology/Oncology came and even though MD Anderson requested an order for a platelet transfusion around 2pm, they're putting it off until tomorrow. I'm glad that at least the bed got fixed.
Prayer Requests:
- Wound - please pray that it wouldn't drain excessively. I saw some suspicious-looking saturation on his dressing today. The doc should be coming any minute now to look at it. I don't want to jump the gun and make hasty conclusions. OKay... doc came at 8:30pm. It's not a CSF leakage thank God. Wound vac will probably be put in tomorrow. So far, it looks "good" for what it is... no signs of infection or pooling or profuse bleeding. Hope that the wound vac helps. Oh, also... the skin around his spine... where he got radiated... is very delicate and the tape from the dressings is kind of causing irritation and some breakdown. Pray for his skin too.
- Platelets & WBC - still dropping. He'll have a platelet infusion tomorrow. Please be in prayer about his blood counts. It made me really sad to see his platelets and WBC so low.
- Phlegm - our primary doc here FINALLY got him started on a breathing treatment to help with the phlegm. It seems to be helping. We'll see how he sleeps tonight. I have no faith in the weekend doctors. I tried all weekend to get them to do something. Poopoo heads. If they didn't decide to do something, at least let me know.
- Hearing - might be getting muffled... but not sure. The doc said he's going to just observe and see what happens. Hope it's not tumor.
- The "usual" - electrolytes (sodium was 132 today :) some other stuff is off but mostly the blood counts), immobility, double vision, unstable vision, pee/poo, appetite, maintain range of motion in his legs, good rest, good moods, positive thoughts, motivation...
- A miracle.
I didn't have the greatest day today. I woke up not really feeling good, felt like throwing up after lunch, was really tired all day. I feel better now. Not really sure what it is. I also have an allergic reaction to the cream or whatever they used on my chest from the facial yesterday. Might have been some mango or something in whatever they used. It feels like a mango rash, but I don't really remember because I haven't had one since Jr. Hi when I figured out I was allergic to mangoes...and mango lotion. Also broke out a little from the threading. I broke out the last time I threaded too... uhm... the last time I threaded was like sophomore year in college... woah like 6-7 years ago. Anyway. Anderson had a hard morning too... I think today, I just ran out of things to say.
The day ended well though. Anderson usually wakes up more at nights. We were able to chat a bit and pray together too. I like the nights when I can climb in his bed and we just chat and I tell him what I'm feeling and he always makes me feel better. It's now 12:30am. As you can see, it takes me almost all night to write these updates. I think I started this one at 8pm.
I push my cot right up next to his bed so that we can hold hands at night as we fall asleep. We always used to do that when we slept in the same bed. He tells me that at night sometimes, my hand goes looking for his hand while I'm sleeping. And sometimes when he wakes up in the middle of the night (which was pretty common b/c he's a light sleeper and he says I breathe hard when I'm asleep), he finds my hand and my fingers close around his... even when I'm sleeping. It's one of our "things". It's one of the biggest things I miss about not being able to sleep next to him.
Anderson says that I need to sleep right now so I can wake up with him to eat breakfast together. He pretty much lives for food. It makes me excited to see him excited. Tonight for dinner, he had Macaroni and Beef (which looked a whole lot like hamburger helper). When it came, he asked me to show it to him and he said "oooh". We had to clean him up a little (because of the busted foley) before he ate... and since the bath team never came, I decided to give him the bath at the same time. While he was waiting to eat, he kept telling me, "the noodles look so good. I'm going to be disappointed if they don't taste good". It was really cute. He ended up liking it. He ate all his hamburger helper, garlic mashed potatoes, cabbage, cream of mushroom soup, iced tea and a big ol' slice of yellow cake with white frosting and rainbow sprinkles on top. Oh, and applesauce. I'm really glad he likes the food here. I'd better get to bed now so I'll be awake for breakfast tomorrow.
Goodnight all!
<3,
Tiff
Pictures
- 2 pictures from Valentine's Day 2008 at Corona Del Mar.
- 2 pictures from our "honeymoon" weekend, the day after our wedding. Who'da known that a year after that Valentine's Day we'd be married? I certainly didn't think so... and neither did Anderson. :D
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