It's been an uneventful 24 hours--yeah! We both slept much last night--sleep helps. The overnight tube feeding went perfect--a first for home. Figured out how to give Tom's medications more efficiently. Still having problems managing saliva. Waiting for a call back from the doctor--hard to know which doctor to talk to--there are several at this point. Tom is such a good sport. I remember when we were first married and he got the flu for the first time. He was laying on the couch feeling miserable. When I walked through the room he smiled at me! I couldn't believe it--how could he smile and feel so yucky?! I knew I had someone special!
Do you ever figure out what you're thinking when you hear it come out of your mouth? I do that alot. Today I heard myself say that I didn't want to spend time being down because then I might miss something with Tom that I didn't want to miss, some part of life that I couldn't get back. It just seems like such a waste when life is so precious, relationships are nonreplaceable!
That's all for today. I'm going to brew myself a cup of camomile tea before bed. I give Tom one more medication at 11:00.
The verse I keep coming back to: "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths."
Proverbs 3:5-6
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Is it Tuesday already?!
How can it feel like time is going fast and slow all at the same time? I just can't decide which it is. Boy, am I on a giant learning curve. Here's the latest: Sunday morning at 2:00 am Tom began having diahrea (TMI, I know!). They turned off the feeding tube and ran saline to try to get the bowels to settle down. At 8:00 am they started the tube feed again and all was well. They decided to keep Tom over one more night. Yesterday the doctor said he was ready to go home and Tom practically bolted out the door! He (and I) were over joyed to get back home.
One of my first tasks was to figure out the timing of all the medications, bolus (in the stomach feedings) and extended jejunal (in the intestines) feeds. All was going well until we woke up at 5:00 to the sound of the pump alarm. It said that there was no OUT FLOW. That meant that something was blocked somewhere--I was hoping it was a kink in the line--no such luck. I tried doing a flush of the line and a method I had been taught to unblock lines BUT when I saw red in the tube that was it. I called our home health nurse who said to call our doctor who said that since radiology at Evergreen Hospital did the procedure I would need to go to the ER. So at 6:00 am we were back in ER. By 8:00 the tube was unblocked (I told the nurse I think I did her job for her since she got it to open so easily!), an exray said that everything was where it was supposed to be and we were on our way back home. Got all the 8:00 meds and food taken care of and now Tom is back on the pump feed to finish out what didn't get done over night. Phew! Tom has been sleeping but just got up and is doing his Tom-dance to show me how well he is doing! Oh, he decided he needs a little more sleep and is now snuggled down in his oh-so-comfortable bed. It really is the simple things in life!
Many are asking how I am doing and I so appreciate all the encouragement and support. I woke up the other morning in the hospital thinking, "for such a time as this." I am so glad I can be there for Tom and want to make this time in our journey all it can be. We are having wonderful confersations and laughing at all kinds of silly things. There are moments when I feel a wave of emotion roll over me but somehow it just keeps rolling most of the time. There are times when all I can do it say the name of Jesus over and over, knowing that there is power in his name. Most of all I just want to stay strong for Tom--I'm the healthy one (if I remember to take my vitamins!) and he needs me to take care of him just like he's taken care of me for all these years. What will I feel tomorrow? I'll tell you tomorrow. All I can do right now is take it a day (or a half day) at a time. I just don't want to miss anything.
Tom continues to beat me at cribbage. I won 2 games in a row and he called it a streak. I called it keeping me interested in the game!
Is there anything more beautiful than a yellow tulip with a black center? OK, I'll probably think that about many other flowers at other times, but right now yellow tulips with black centers are sitting on my dining table and I just can't get enough of their beauty.
If you are reading this and happen to be one of the ones praying for us, first of all THANK YOU! Please join us in praying that the pnemonia will be completely gone when we see the doctor next week. Also for normal bowels! (TMI again!!!) One more thing is that we could find a way to get Tom's saliva under control. OK, now that really is more than you wanted to know but it's at the top of priority list so we share it with you.
I'm going to go join Tom for a little more sleep. May we all find the hidden treasures of joy that are there for us today.
One of my first tasks was to figure out the timing of all the medications, bolus (in the stomach feedings) and extended jejunal (in the intestines) feeds. All was going well until we woke up at 5:00 to the sound of the pump alarm. It said that there was no OUT FLOW. That meant that something was blocked somewhere--I was hoping it was a kink in the line--no such luck. I tried doing a flush of the line and a method I had been taught to unblock lines BUT when I saw red in the tube that was it. I called our home health nurse who said to call our doctor who said that since radiology at Evergreen Hospital did the procedure I would need to go to the ER. So at 6:00 am we were back in ER. By 8:00 the tube was unblocked (I told the nurse I think I did her job for her since she got it to open so easily!), an exray said that everything was where it was supposed to be and we were on our way back home. Got all the 8:00 meds and food taken care of and now Tom is back on the pump feed to finish out what didn't get done over night. Phew! Tom has been sleeping but just got up and is doing his Tom-dance to show me how well he is doing! Oh, he decided he needs a little more sleep and is now snuggled down in his oh-so-comfortable bed. It really is the simple things in life!
Many are asking how I am doing and I so appreciate all the encouragement and support. I woke up the other morning in the hospital thinking, "for such a time as this." I am so glad I can be there for Tom and want to make this time in our journey all it can be. We are having wonderful confersations and laughing at all kinds of silly things. There are moments when I feel a wave of emotion roll over me but somehow it just keeps rolling most of the time. There are times when all I can do it say the name of Jesus over and over, knowing that there is power in his name. Most of all I just want to stay strong for Tom--I'm the healthy one (if I remember to take my vitamins!) and he needs me to take care of him just like he's taken care of me for all these years. What will I feel tomorrow? I'll tell you tomorrow. All I can do right now is take it a day (or a half day) at a time. I just don't want to miss anything.
Tom continues to beat me at cribbage. I won 2 games in a row and he called it a streak. I called it keeping me interested in the game!
Is there anything more beautiful than a yellow tulip with a black center? OK, I'll probably think that about many other flowers at other times, but right now yellow tulips with black centers are sitting on my dining table and I just can't get enough of their beauty.
If you are reading this and happen to be one of the ones praying for us, first of all THANK YOU! Please join us in praying that the pnemonia will be completely gone when we see the doctor next week. Also for normal bowels! (TMI again!!!) One more thing is that we could find a way to get Tom's saliva under control. OK, now that really is more than you wanted to know but it's at the top of priority list so we share it with you.
I'm going to go join Tom for a little more sleep. May we all find the hidden treasures of joy that are there for us today.
Sunday, April 26, 2009
Divine appointment
It's the end of day 3 in the hospital. At 9:00 this morning we were feeling bummed that we were missing chuch. I turned on the tv to see if we could find a service to watch. We happened upon a sermon by Adrian Rogers called Discipline of the Dark. Wow, it was made to order just for us. We listened to it a second time online. If you're interested you can hear it at this link: www.lightsource.com/ministry/love-worth-finding. It's full of memorable quotes:
"The faith that is born in the light is often developed in the dark."
"Never doubt in the dark what you've learned in the light."
"The test of your character is what you do in the dark."
Those are just some that stood out to me. There is so much more. I want to listen to it again and take notes. All that to say that we found great joy that God met our need for today in a hospital room via a tv sermon--the timing could not have been better.
Another joy was receiving flowers from a woman who Tom helped severalyears ago. he heard he was in the hospital and wanted him to know she was praying for him. I told Tom that was the "Boomerang Joy" Barbara Johnson talks about--joy that you give to someone else coming back to bless you!
More joy has been the nurses who have cared for Tom. Young (Tom calls her Mama) shared her philosophy of nursing. She said she got it from a nursing school professor. She thinks of herself as the mother and the patient as her baby--we've enjoyed her tender loving care. Demba is our afternoon nurse. He is from Ghana. It's been fun interacting with him. He's been very patient with all the laughter coming from visitors to our room.
It's our grandson Maximus Alexander's 2nd birthday today. It was fun singing to him on the phone this morning. We look forward to our private party later in the week when Far (that's Tom) feels up to it. Happy birthday, Moose!
It was great to have our son Kemp and fiance Angie visit tonight. They brought more laughter and lots of love into the room. We're looking forward to dancing at their wedding on October 10th.
I close with another thought from Adrian Rogers: Why is not the important question. The important question is how--how are we going to react when the lights go out. In the midst of all that is happening we are both finding that trust and faith is what is carrying us through. It really is true that relationship is more important than the reason.
Jesus loves you--pass it on!
"The faith that is born in the light is often developed in the dark."
"Never doubt in the dark what you've learned in the light."
"The test of your character is what you do in the dark."
Those are just some that stood out to me. There is so much more. I want to listen to it again and take notes. All that to say that we found great joy that God met our need for today in a hospital room via a tv sermon--the timing could not have been better.
Another joy was receiving flowers from a woman who Tom helped severalyears ago. he heard he was in the hospital and wanted him to know she was praying for him. I told Tom that was the "Boomerang Joy" Barbara Johnson talks about--joy that you give to someone else coming back to bless you!
More joy has been the nurses who have cared for Tom. Young (Tom calls her Mama) shared her philosophy of nursing. She said she got it from a nursing school professor. She thinks of herself as the mother and the patient as her baby--we've enjoyed her tender loving care. Demba is our afternoon nurse. He is from Ghana. It's been fun interacting with him. He's been very patient with all the laughter coming from visitors to our room.
It's our grandson Maximus Alexander's 2nd birthday today. It was fun singing to him on the phone this morning. We look forward to our private party later in the week when Far (that's Tom) feels up to it. Happy birthday, Moose!
It was great to have our son Kemp and fiance Angie visit tonight. They brought more laughter and lots of love into the room. We're looking forward to dancing at their wedding on October 10th.
I close with another thought from Adrian Rogers: Why is not the important question. The important question is how--how are we going to react when the lights go out. In the midst of all that is happening we are both finding that trust and faith is what is carrying us through. It really is true that relationship is more important than the reason.
Jesus loves you--pass it on!
Saturday, April 25, 2009
Keep dancing
Tom's and my 40 year journey together has been full of adventures--some big and some small. But this latest adventure is full of unknowns as we learn how to cope with life changing health issues. It's hard to even know where to begin. I write this as a way for us to chronicle our journey. We share it as a way of keeping family and friends up to date.
Tom suffered a stroke in 2007. Speech and swallowing problems that followed were diagnosed as relating to the stroke. But when we look back, Tom was having swallow issues back in 2006. In March of this year we saw our speech therapist and she was concerned that Tom's speech had gotten significantly worse. She explained that stroke symptoms either stay the same or get better. It was our first hint that maybe this wasn't a stroke related issue. Later that week we saw the neurologist who expressed concern that more might be going on. He did an EMG to test for motor neuron disease (MND). He told us he was suspicious it was ALS (Lou Gerig's disease) but wanted to send us to the neurology department at the University of Washington for a second opinion.
When I originally called the UW Medical Center to schedule an appointment I was told they were making appointments in August--that sure seemed like a long time to wait. The following week we were given an appointment on April 16th. Thank you all who prayed for a closer date--your prayers were answered! We were very impressed with the doctors we saw at UW. The first was specializing in a neurology in his residency--a very smart young man who delighted in Tom's antics. The doctor he reported to is Dr. Weiss, a professor of neurology at UW. The result of the visit was another EMG and more blood work to rule out some remote possibilities before making a final diagnosis. We are scheduled to return to UW on May 6th to learn more.
Meanwhile Tom's swallowing has progressed from very difficult to now it's getting dangerous. In March he was put on a nectar thick liquid diet. We tried all kinds of soups and drinks trying to get enough calories into his body. Everything seemed to have too much taste or cause a burning feeling in Tom's throat. We finally settled on Ensure Plus--4 a day to maintain his already low weight. On April 8th he had had enough and decided to go ahead with a feeding tube which would be put into his stomach and small intestine. On April 21st the tube was put in and we spent a night in the hospital to make sure it was working properly. Wednesday we went home and started figuring out how to use all the new paraphenalia that goes with tube feeding. What an amazing thing it is. We are both relieved not to have to worry about swallowing.
One of Tom's comments,though, was he would really miss eating fresh crab that our son gets while scuba diving. We told he we would just blend it up and put it in his tube! He said he's still miss the taste. Well, we had an answer for that, too--he can put some in his mouth, chew it up and spit it out. We'll let you know about the crab after July 1 when the season opens.
Very early Friday, the 24th, Tom was running a fever, experiencing chills and coughing. We arrived at the emergency room at 6:00 am. Tom had developed a bacterial pnemonia probably due to aspiration--just what we were hoping to avoid. Today is Saturday. It's been a long day for Tom with nothing to do but lie in bed and let his body absorb the antibiotics. We've also been working on getting the tube feedings adjusted. I passed the tube feeding test tonight with Tom's nurse. Tom's temperature and blood pressure have gone up and he is coughing a bit more. He is very eager to leave the hospital. I just don't want him to get discouraged. I am praying he is well so he can be released and I can take him home tomorrow.
Many lessons have already been learned from this journey we are on. One is how magnified life has become. Everything seems clearer, little things more important and valuable. Children and grandchildren come to visit--the whole world stops while we share time with each other. Friends take time to call or visit and we realize the value of relationships. People tell us they are praying for us and we can feel the peace of God covering us in unexplainable ways--ways we just accept without understanding any more than it just is. Our relationship with Jesus is our rock and our security. We treasure our relationship with each other. These are the things in life that give life meaning and value. If you are one of those we speak of, thank you for being a part of our lives.
While sitting with Tom in the hospital I have been reading a book that has been on our book shelf for a long time. It's called "Boomerang Joy". It's by Barbara Johnson, a delightfully funny lady who I have adopted as my cheerleader and funny bone mentor. She's worth looking up. I'll share much more about her as I write but here is a paragraph sized synopsis of her book--it's her opening lines:
"No kidding! My life is full of complication and suspense. Not one of us knows what's going to happen next. Or how long we have to live. Or how long we have to love. That's why we have to make each moment count in a kind of boomerang way. Boomerang joy is the kind that smacks back to you when you add joy to someone else's life."
One thing that I am finding is that there can be great joy in the midst of hard times. There is joy in taking care of someone you love. There is joy when lives are shared in spite of the circumstances. There is joy in picking up a book and knowing it was meant to be read right now --a surprise encounter with encouragement and support. There is joy in having a son-in-love who when asked for advice on setting up a blog sits right down and makes it happen. (Thanks, Chris.)
Well, that's my first posting on this blog adventure. It's going to be interesting to see where it takes us.
In honor of Tom I leave you with these B.J. words: "Dance with joy and keep dancing."
Tom suffered a stroke in 2007. Speech and swallowing problems that followed were diagnosed as relating to the stroke. But when we look back, Tom was having swallow issues back in 2006. In March of this year we saw our speech therapist and she was concerned that Tom's speech had gotten significantly worse. She explained that stroke symptoms either stay the same or get better. It was our first hint that maybe this wasn't a stroke related issue. Later that week we saw the neurologist who expressed concern that more might be going on. He did an EMG to test for motor neuron disease (MND). He told us he was suspicious it was ALS (Lou Gerig's disease) but wanted to send us to the neurology department at the University of Washington for a second opinion.
When I originally called the UW Medical Center to schedule an appointment I was told they were making appointments in August--that sure seemed like a long time to wait. The following week we were given an appointment on April 16th. Thank you all who prayed for a closer date--your prayers were answered! We were very impressed with the doctors we saw at UW. The first was specializing in a neurology in his residency--a very smart young man who delighted in Tom's antics. The doctor he reported to is Dr. Weiss, a professor of neurology at UW. The result of the visit was another EMG and more blood work to rule out some remote possibilities before making a final diagnosis. We are scheduled to return to UW on May 6th to learn more.
Meanwhile Tom's swallowing has progressed from very difficult to now it's getting dangerous. In March he was put on a nectar thick liquid diet. We tried all kinds of soups and drinks trying to get enough calories into his body. Everything seemed to have too much taste or cause a burning feeling in Tom's throat. We finally settled on Ensure Plus--4 a day to maintain his already low weight. On April 8th he had had enough and decided to go ahead with a feeding tube which would be put into his stomach and small intestine. On April 21st the tube was put in and we spent a night in the hospital to make sure it was working properly. Wednesday we went home and started figuring out how to use all the new paraphenalia that goes with tube feeding. What an amazing thing it is. We are both relieved not to have to worry about swallowing.
One of Tom's comments,though, was he would really miss eating fresh crab that our son gets while scuba diving. We told he we would just blend it up and put it in his tube! He said he's still miss the taste. Well, we had an answer for that, too--he can put some in his mouth, chew it up and spit it out. We'll let you know about the crab after July 1 when the season opens.
Very early Friday, the 24th, Tom was running a fever, experiencing chills and coughing. We arrived at the emergency room at 6:00 am. Tom had developed a bacterial pnemonia probably due to aspiration--just what we were hoping to avoid. Today is Saturday. It's been a long day for Tom with nothing to do but lie in bed and let his body absorb the antibiotics. We've also been working on getting the tube feedings adjusted. I passed the tube feeding test tonight with Tom's nurse. Tom's temperature and blood pressure have gone up and he is coughing a bit more. He is very eager to leave the hospital. I just don't want him to get discouraged. I am praying he is well so he can be released and I can take him home tomorrow.
Many lessons have already been learned from this journey we are on. One is how magnified life has become. Everything seems clearer, little things more important and valuable. Children and grandchildren come to visit--the whole world stops while we share time with each other. Friends take time to call or visit and we realize the value of relationships. People tell us they are praying for us and we can feel the peace of God covering us in unexplainable ways--ways we just accept without understanding any more than it just is. Our relationship with Jesus is our rock and our security. We treasure our relationship with each other. These are the things in life that give life meaning and value. If you are one of those we speak of, thank you for being a part of our lives.
While sitting with Tom in the hospital I have been reading a book that has been on our book shelf for a long time. It's called "Boomerang Joy". It's by Barbara Johnson, a delightfully funny lady who I have adopted as my cheerleader and funny bone mentor. She's worth looking up. I'll share much more about her as I write but here is a paragraph sized synopsis of her book--it's her opening lines:
"No kidding! My life is full of complication and suspense. Not one of us knows what's going to happen next. Or how long we have to live. Or how long we have to love. That's why we have to make each moment count in a kind of boomerang way. Boomerang joy is the kind that smacks back to you when you add joy to someone else's life."
One thing that I am finding is that there can be great joy in the midst of hard times. There is joy in taking care of someone you love. There is joy when lives are shared in spite of the circumstances. There is joy in picking up a book and knowing it was meant to be read right now --a surprise encounter with encouragement and support. There is joy in having a son-in-love who when asked for advice on setting up a blog sits right down and makes it happen. (Thanks, Chris.)
Well, that's my first posting on this blog adventure. It's going to be interesting to see where it takes us.
In honor of Tom I leave you with these B.J. words: "Dance with joy and keep dancing."
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