Today, Derek was moved from the mask oxygen to just the nostril type. He maintained his numbers well, and has had visitors and been a little spunky. Wesley came over to see us and other visitors, all a joy. Although I'm replaying yesterday afternoon in my mind and wondering if I should have done anything differently, I think he is in the best shape possible after having aspirated like that. The CT of the chest diagnosed it as pneumonia or pneumotitis.
Now, we just have some regular hospital policies to live through...the pretest for eating (x-ray to make sure g-tube is in right place), getting correct food cans for the tube, getting a walker (must go through complete PT eval first), etc.
Thanks for your prayers and we'll keep you posted. We may be here a couple days.
Thankful to God for his provision.
Leann
Saturday, December 28, 2013
Friday, December 27, 2013
ER visit
Derek woke from a nap around 1:30pm today vomiting. He then coughed incessantly and became chilled and breathing was labored. Dad Sauder and I brought him in to the ER and he has fluid in both lungs and is getting started on an IV antibiotic. Please pray for us. Thank you, Leann
Tuesday, December 24, 2013
Voicebox procedure
We got home tonight after having the voicebox procedure this afternoon. We were looking at the weather forecast and decided to drive up Saturday instead of driving up Sunday afternoon. The other complexity was not knowing my report time until Sunday after 8:15 pm. That is just part of Mayos procedures. Dad Sauder also decided to go with us when we knew the weather was going to be bad. The good thing was that the roads were only bad for a few miles till we got through Peoria, then they were dry. Lots of people where in the ditch on I-155 which is our first 10 miles.
Yesterday was a long day as we waited for bedtime to roll around. I played a few games of chess with Wesley. He is just learning to play. After we listened to church we went to Applebee's for lunch/supper. We took all the kids along and they did pretty good.
The voicebox procedure went fine without complications. After the swallow study on the last trip, the surgeon could see that all he needed to do was the injection, not the dilation. I checked in a little before 11, and we were on the road by 4 this afternoon. This was a simple enough procedure there is more time spent in preop than in the actual procedure. So he used a needle to inject collagen into the right vocal cord. The goal is to make it larger so it closes against the left side better. I'm not supposed to talk for the first day. Then I will have a weaker and hoarse voice for 2-4 weeks. Then it should be better for 3-6 months. After that it is unknown whether the improvement will continue or fade away. Dr Ekbom hopes it helps my swallowing too. The voice he fully expects to be better.
Thanks for everyone's prayers. I was surprised when the surgeon mentioned that he prays for his surgeries each morning. It shouldn't surprise me but I guess it is just that I appreciate it so much.
We hope everyone has a good Christmas week spending time with families and remembering what Christ did for us. It must have been humbling to leave the splendor of heaven and coming to earth knowing he would end up dying for us.
Derek & Leann
Yesterday was a long day as we waited for bedtime to roll around. I played a few games of chess with Wesley. He is just learning to play. After we listened to church we went to Applebee's for lunch/supper. We took all the kids along and they did pretty good.
The voicebox procedure went fine without complications. After the swallow study on the last trip, the surgeon could see that all he needed to do was the injection, not the dilation. I checked in a little before 11, and we were on the road by 4 this afternoon. This was a simple enough procedure there is more time spent in preop than in the actual procedure. So he used a needle to inject collagen into the right vocal cord. The goal is to make it larger so it closes against the left side better. I'm not supposed to talk for the first day. Then I will have a weaker and hoarse voice for 2-4 weeks. Then it should be better for 3-6 months. After that it is unknown whether the improvement will continue or fade away. Dr Ekbom hopes it helps my swallowing too. The voice he fully expects to be better.
Thanks for everyone's prayers. I was surprised when the surgeon mentioned that he prays for his surgeries each morning. It shouldn't surprise me but I guess it is just that I appreciate it so much.
We hope everyone has a good Christmas week spending time with families and remembering what Christ did for us. It must have been humbling to leave the splendor of heaven and coming to earth knowing he would end up dying for us.
Derek & Leann
Tuesday, December 10, 2013
Voicebox Consult
We met with Dr Ekbom today. His nurse used a scope to look at my voicebox so they could see what was happening there. The right side only moves the slightest amount. The left side is doing all the work when I talk. This was what we expected since we had seen that before. He recommended two things. The vocal cord injection and a dilation of the airway. Or I could do a permanent surgery but it is more invasive and I would have to stop the chemo for longer so we are going to do the less invasive route. In some patients it lasts 3-6 months, in some it lasts much longer. Tomorrow I need to do another swallow study as Dr Ekbom wants that to see where things are getting stuck before he does the procedure. That is after lunch, and we couldn't get it soon enough to do the procedure tomorrow. So we will have to come back up, probably the week of Christmas. The procedure will be outpatient but they will put me under general anesthesia so I don't have to worry about my gag reflex.
Derek & Leann
Wednesday, December 4, 2013
Chemo is working
Good news at this checkup. The scans show that the tumors haven't grown in the last couple months. The tumors are less enhancing by the contrast as well which means that they aren't as active. So the doctors seemed pretty happy. And of course we were as well. The doctors agreed to try getting off the steroid over the next couple weeks as well. The doctors want to have the next scans in 3 months.
We actually are going back up next week for the vocal cord procedure. This should hopefully help my voice be stronger and the swallowing better. We couldn't get this done on this visit. They will inject the paralyzed vocal cord to make it close more against the left side which functions like normal.
We talked about the mental slowness and think that is due to one of the medications I was trying for the hiccups. I feel that getting better so I tend to agree it is not the chemo. I don't feel 100% yet but feel like I have more drive and ambition than I did a few weeks ago.
The stomach tube checked out ok as well. I spent a fair amount of time talking with the nutritionist and she is going to change my prescription to 4 cans that I had been taking plus 2 cans of real food that are 300 calories each. The hope is that twice a day I can do 1 of each (plus 1 each the other two times) and not feel as full and tired as the 2 cans (500 each, 1000 cal total) were making me. I don't remember her suggesting these before but these new cans have chicken and vegetables and fruits in them instead of just sugary stuff. I have lost some more weight and am trying to put it back on.
Thanks for all the prayers and support. Just pray I continue to talk more and my brain continues to function better. And thank the Lord that the chemo is working!
Derek & Leann
Sunday, December 1, 2013
Eye better
Thanks for everyone praying for me over the last couple weeks. I think it has really made a difference. Things are going a lot better.
My eye was stitched shut for five days. The dr had seen a missing chunk of cornea and suggested a stitch to keep it shut to help healing. I didn't have any pain but it was very annoying to see out of one eye. Plus I looked like quite the sight with one eye stitched shut. Thankfully when I went back Tuesday it had healed and they could remove the stitch. Since then I've been able to see clearly and that has helped my spirits quite a bit.
I can't explain why but I've been able to eat more as well. I still eat small amounts and slowly but I have been able to eat more and that helps. For some reason I lost some weight so I've upped the feeding tube regimen to five cans per day. I am still figuring out the best way to get this down. I feel pretty full. I didn't realize I was losing weight till I started getting sores on my legs. I have used the power chair some more even though I can still walk. It has a good air filled pad that I can sit on without getting sore.
The hiccups have been gone this week and I'm enjoying that too. I might get a couple an hour, which is nothing when they were coming 10-20 a minute.
I think my brain function has returned somewhat but it is not back to what it used to be. I still feel like my personality is different but I can talk some.
We are headed to mayo on Tuesday for the next set of scans. This should give an indication if the current chemo is working.
Thanks for all the support and prayers we feel.
Derek and Leann
D
My eye was stitched shut for five days. The dr had seen a missing chunk of cornea and suggested a stitch to keep it shut to help healing. I didn't have any pain but it was very annoying to see out of one eye. Plus I looked like quite the sight with one eye stitched shut. Thankfully when I went back Tuesday it had healed and they could remove the stitch. Since then I've been able to see clearly and that has helped my spirits quite a bit.
I can't explain why but I've been able to eat more as well. I still eat small amounts and slowly but I have been able to eat more and that helps. For some reason I lost some weight so I've upped the feeding tube regimen to five cans per day. I am still figuring out the best way to get this down. I feel pretty full. I didn't realize I was losing weight till I started getting sores on my legs. I have used the power chair some more even though I can still walk. It has a good air filled pad that I can sit on without getting sore.
The hiccups have been gone this week and I'm enjoying that too. I might get a couple an hour, which is nothing when they were coming 10-20 a minute.
I think my brain function has returned somewhat but it is not back to what it used to be. I still feel like my personality is different but I can talk some.
We are headed to mayo on Tuesday for the next set of scans. This should give an indication if the current chemo is working.
Thanks for all the support and prayers we feel.
Derek and Leann
D
Monday, November 18, 2013
Update
Just a general update to keep everyone informed. The last couple weeks has been harder for me. i have struggled more with a few things. I think the steroid gave me a horrible case of the hiccups. I was originally on 4 mg twice a day but cutting the rate slowly to 2 mg seems to have helped somewhat. I was also taking a medicine and tried to eliminate that a few days ago and they seem to be worse. So I think the answer is going to be the medicine plus 2 mg dose of the steroid. Sometimes changing positions helps, eating and talking are worse. It could be 10-20 times per minute. It's not painful but very annoying. My stomach tube has been leaking worse and I think the hiccups are not helping it.
The biggest change I notice is in my thinking. I feel like my brain is really slowing down quite a bit. It makes me much more quiet. I used to be more of a talker, I was always thinking and speaking. It's been harder to go to church or work when I don't have as much to say. And around home is the worst. Leann is used to me talking for a couple hours each night and now I feel like I have nothing to say.
My talking is hard as well. I think it's due to the facial nerve not working as well. It's affected my tongue as well and I can't speak as clearly as I used to. The volume is less which I think people would get used to but it's hard to slow down enough that people can make out what I am saying.
Then there is the sight. Because my right eye doesn't close as well, the cornea is more irritated and dry. This causes blurry vision unless I hold my right eye shut. I've been sleeping with a bubble over my eye to keep it moist at night. Im thankful I'm not actually losing my vision though. I've got appt later this week with a doctor, they might do some temporary weights to help my eyelid close. The last couple days have been a little bit better, if anything this is improving.
The hope is that the chemo can work on the tumor particularly around the facial nerve and I can get some function back over time. It's hard to know though what is causing what. Is the chemo itself causing the brain symptoms? If so, is it worth it? The next scans the 3rd and 4th of Dec at Mayos will tell us if the chemo is stopping tumor growth or not.
I guess that is the medical summary. From a spiritual standpoint, it's been harder as well. I don't feel like my life is nearing it's end. The symptoms have been harder to bear and some days are harder to endure through. There are times when I feel like I just want to go home. Leann is caught in a weird spot where she doesn't want to see me suffer but doesn't want to be without me either. So sometimes we can find ourselves thinking if I just slipped away some night in my sleep, that would be good. I have found that things of earth seem to fade away in importance. I opened one morning to John 14 and that gave me lots of hope. It speaks of Jesus going to prepare mansions for us. It's hard to think of earth when you have this on your mind.
What to pray for? A couple things that are most important. The first is that I can find a purpose and usefulness to those around me as I see my function decrease. The second is that I can be more talkative and my brain can have thoughts to share. Thanks for all those who have sent cards or come to visit. Sometimes I just lay down but have enjoyed the singing and visits of those who have come.
Derek & Leann
The biggest change I notice is in my thinking. I feel like my brain is really slowing down quite a bit. It makes me much more quiet. I used to be more of a talker, I was always thinking and speaking. It's been harder to go to church or work when I don't have as much to say. And around home is the worst. Leann is used to me talking for a couple hours each night and now I feel like I have nothing to say.
My talking is hard as well. I think it's due to the facial nerve not working as well. It's affected my tongue as well and I can't speak as clearly as I used to. The volume is less which I think people would get used to but it's hard to slow down enough that people can make out what I am saying.
Then there is the sight. Because my right eye doesn't close as well, the cornea is more irritated and dry. This causes blurry vision unless I hold my right eye shut. I've been sleeping with a bubble over my eye to keep it moist at night. Im thankful I'm not actually losing my vision though. I've got appt later this week with a doctor, they might do some temporary weights to help my eyelid close. The last couple days have been a little bit better, if anything this is improving.
The hope is that the chemo can work on the tumor particularly around the facial nerve and I can get some function back over time. It's hard to know though what is causing what. Is the chemo itself causing the brain symptoms? If so, is it worth it? The next scans the 3rd and 4th of Dec at Mayos will tell us if the chemo is stopping tumor growth or not.
I guess that is the medical summary. From a spiritual standpoint, it's been harder as well. I don't feel like my life is nearing it's end. The symptoms have been harder to bear and some days are harder to endure through. There are times when I feel like I just want to go home. Leann is caught in a weird spot where she doesn't want to see me suffer but doesn't want to be without me either. So sometimes we can find ourselves thinking if I just slipped away some night in my sleep, that would be good. I have found that things of earth seem to fade away in importance. I opened one morning to John 14 and that gave me lots of hope. It speaks of Jesus going to prepare mansions for us. It's hard to think of earth when you have this on your mind.
What to pray for? A couple things that are most important. The first is that I can find a purpose and usefulness to those around me as I see my function decrease. The second is that I can be more talkative and my brain can have thoughts to share. Thanks for all those who have sent cards or come to visit. Sometimes I just lay down but have enjoyed the singing and visits of those who have come.
Derek & Leann
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