Where did I leave off--oh, yes, we were having a quiet day. . .until about 4:00 when Tom was having difficulty breathing. Talked to Merati's nurse who said to put the tube back in. Easier said than done but we had the choice of me doing it OR taking him to ER. Dr. Merati wanted to see us the next morning. I knew that I would be more gentle so as hard as it was we got it back in. Tom felt immediate relief and we had a fairly good night.
Today is Christmas eve. We began it at the UW Med Center. It was decided to try an even shorter tube, use it during the night and try to keep it out as much as possible during the day. They also put him back on antibiotics for 5 days. We're still hopeful that the lesions in the trach will heal soon.
About 1:00 we headed over to Kylisa and Chris' house for our Christmas eve celebration. We enjoy nothing more than being with our children and grandchildren. It's strange to not be a part of the cooking this year but I had no energy for it and the kids are so capable. Very satisfying to watch the next generation take over and enjoy doing it. Love seeing them all get along so well and enjoy each other.
He, too, enjoyed the afternoon. Though when it got too loud he took some time out and slept. We came home about 7:00. He is fed, had his meds and is settled in for the night. I am close behind him but first will enjoy a cup of sleepy tea courtesy of daughter April. Tom was not up to going to our Christmas eve service tonight--it would have been a very long day for him. We both miss not being there. I am watching a wonderful Christmas concert on tv. Just goes to show that there are many ways to celebrate the birth of our Savior Jesus Christ. I love Christmas music--such a story to tell, such a wonderful God we serve who cared enough to send His Son so we could know Him better and be invited into such an intimate relationship for all eternity. What peace.
Peace--I laughed today when Tom wrote that he wanted "peace meds." I had to stop and think what he was talking about. Oh, yeah--I had been calling the lorazapan "calming drugs". I like Tom's name better! The other thing he enjoys writing is, "this surgical procedure was not a pain in the ass but a pain in the neck!" Yes, it does sound just like Tom! And I don't even want to censor him! I'm loving "hearing" every word he "speaks".
A friend shared something she learned in her grief support group. Someone there said, "don't worry about what's coming. Just do the next thing." I've been thinking alot about that--it's becoming a way of life--just doing the next thing--can't think much beyond it. Just good to hear someone say that that's enough.
Thursday, December 24, 2009
Wednesday, December 23, 2009
Quiet after storm
The quiet day we expected yesterday turned into a storm! The lesions in Tom's trach appeared to be a little worse again so I called Dr. Merati's nurse. She checked with the doc who said he wanted Tom to take the trach tube out and leave it out and to see him on Monday morning. This left both of us a little concerned--it's been like a security blanket knowing that it was keeping the trach open. What would happen without it even though that was the eventual goal?
About 2:00 in the afternoon I heard a thud and knew Tom had fallen. He had tried to kick something out of the way and took a tumble--right on his nose and forehead which he really skinned up. I was afraid he had had another stroke but he fought his way up (I wanted him to stay down until I knew he was ok) and assured me he was ok--kind of! After the fall he was very agitated. Talked to the hospice triage nurse (which I am REALLY starting to appreciate-- you can call ANYTIME and they answer right away!) and she suggested a little lorazapam. I was nervous that it might affect his breathing (relax him too much) but I was wrong and it did the job. Tom was able to relax and actually get some sleep. But after sleeping for awhile he woke with blood in his mouth and it just wouldn't stop--didn't think about him being on Plavex. A visiting nurse stopped by to check him out which made me feel much better before sleeping.
Tom was up and down most of the night but this morning we both went back to sleep after breakfast. We're trying feeding Tom just in the G tube since there is no longer any danger of aspirating. He likes it better--says it's more natural. It gets him away from the pump which he hates. Hopefully this will work for him.
We're still planning on trying "coffee and a little cake" on Christmas--might be Christmas eve--we'll see how he's doing.
So far today is that quiet day I've been hoping for. Praying it continues.
About 2:00 in the afternoon I heard a thud and knew Tom had fallen. He had tried to kick something out of the way and took a tumble--right on his nose and forehead which he really skinned up. I was afraid he had had another stroke but he fought his way up (I wanted him to stay down until I knew he was ok) and assured me he was ok--kind of! After the fall he was very agitated. Talked to the hospice triage nurse (which I am REALLY starting to appreciate-- you can call ANYTIME and they answer right away!) and she suggested a little lorazapam. I was nervous that it might affect his breathing (relax him too much) but I was wrong and it did the job. Tom was able to relax and actually get some sleep. But after sleeping for awhile he woke with blood in his mouth and it just wouldn't stop--didn't think about him being on Plavex. A visiting nurse stopped by to check him out which made me feel much better before sleeping.
Tom was up and down most of the night but this morning we both went back to sleep after breakfast. We're trying feeding Tom just in the G tube since there is no longer any danger of aspirating. He likes it better--says it's more natural. It gets him away from the pump which he hates. Hopefully this will work for him.
We're still planning on trying "coffee and a little cake" on Christmas--might be Christmas eve--we'll see how he's doing.
So far today is that quiet day I've been hoping for. Praying it continues.
Tuesday, December 22, 2009
The Invisible Woman
Just watched a great video. Tried to attach it to this blog but what came up was not at all what I expected so will just give the link and anyone can go to You Tube and see it for yourself. It's worth watching. It's titled INVISIBLE WOMAN by Nicole Johnson. She has a website at freshbrewed coffee.com. She also has one called GIRLFRIENDS--both worth watching. I'm very thankful for my girlfriends. Though we don't see each other much right now I know they are there.
The gift of a smile
Boy, the days go fast. Sunday Tom and I were both disappointed not to go the church. Tom was sure on Saturday night that he would be up to going but Sunday morning it was just too much so we went back to bed and slept some more.
Yesterday, Monday, we were at the UW Med Ctr at 10:00 am for a swallow test. It showed that the separation of the esophogus and trachea is correct. Tom had to swallow some really bitter tasting liquid. The highlight there was having the radiology tech be PK who we had met before. She is feisty and fun, an Oregon Duck working among the WN Dawgs and loving it that they are paying her! At the end of the visit she and Tom were dancing with each other, showing off their moves. That man just never ceasesto amazes me!
Next we went to Dr Merati's office to get the stitches out and get the trach checked out. Getting the stitches out was VERY painful but it's done. The doctor is concerned about 3 sores in the trachea that I will watch very carefully. They gave Tom a shorter tube hoping that it would rub less. We also have an antibiotic creme to use. The shorter tube is much easier to put in. We will also try leaving it out for periods of time.
The good news is that we are getting much better sleep at night. Tom is more relaxed AND we are back to playing cribbage. It's amazing how content one can become in living such a simple life. One of my greatest joys has become seeing a smile cross Tom's face. They used to be a constant. Now they are precious gifts.
Yesterday, Monday, we were at the UW Med Ctr at 10:00 am for a swallow test. It showed that the separation of the esophogus and trachea is correct. Tom had to swallow some really bitter tasting liquid. The highlight there was having the radiology tech be PK who we had met before. She is feisty and fun, an Oregon Duck working among the WN Dawgs and loving it that they are paying her! At the end of the visit she and Tom were dancing with each other, showing off their moves. That man just never ceasesto amazes me!
Next we went to Dr Merati's office to get the stitches out and get the trach checked out. Getting the stitches out was VERY painful but it's done. The doctor is concerned about 3 sores in the trachea that I will watch very carefully. They gave Tom a shorter tube hoping that it would rub less. We also have an antibiotic creme to use. The shorter tube is much easier to put in. We will also try leaving it out for periods of time.
The good news is that we are getting much better sleep at night. Tom is more relaxed AND we are back to playing cribbage. It's amazing how content one can become in living such a simple life. One of my greatest joys has become seeing a smile cross Tom's face. They used to be a constant. Now they are precious gifts.
Saturday, December 19, 2009
Scary day turns out ok
It's Saturday evening. I am enjoying an Andy Williams Christmas special from the '60s. Tom is settled for at least the first part of the night. I will soon follow him but first of all must catch up on the last few days.
Thursday started out quiet but when I took the trach tube out to clean it I really got scared. When I checked Tom's trach it looked like there was a hole/sore about the size of a dime a little way down. It was round and very bloody looking. I left the room just to take a deep breath and ask God to give me strength. I went back to check it and it was still the same. I called hospice and they said they would check with the doctor for me. Called Kemp and he said he would come right over. He said to call 911 NOW. I called but hung up but 911 has a way of finding you. They called me back and said they would be right here. Hospice called back and said to take Tom to ER. 911 arrived and after taking his vital signs said he was safe to transport so off to ER we went. Called the prayer chain on the way and asked them to pray. 3 hours later the ENT docs arrived. When they took a look they couldn't find what I was talking about. I don't know what happened--maybe there was clotted blood shaped in a perfect circle that Tom coughed up OR maybe God decided that this was more than we could handle (1 Cor 10:13) and healed it. It turned out to be a good visit because my greatest fear has been that I would do something wrong and cause harm to Tom. The docs said everything looked good and gave me some direction in how to take care of it even better. We came home exhausted again and went straight to bed for a nap. I had both of us really scared.
Friday we had nothing planned--just working on a few work projects that I am trying to finish. The hospice social worker called and asked to come by in the afternoon. We ended up having about a 2 hour conversation that was informative and helpful. I was feeling torn about hospice but after meeting with Chris decided that it would be a good thing to continue. We both were in bed by 8:00 pm. The first 3 times Tom needed help I got up with a smile but at 3:00 am told him that I really needed to get some sleep if he could manage without waking me. We got him well settled and didn't wake up again until 7:30 when I got up to give him meds and feed him. Decided to go back to bed and didn't get up until awaken by the phone at 10:30!
During those wakeful times (too bad you can't just go right back to sleep after being awaken!) I had a rather surprising realization. I realized that I have been angry. I know there are stages to grieving--denial, anger and acceptance--but I hadn't identified the anger part. I kept thinking that meant anger at God. The anger for me expressed itself in my thoughts of "if you're going to die then just do it because I don't want to go through the pain of doing this any more." That thought drove me crazy because I didn't want it but it kept coming back. Wouldn't you know that it would take another crisis to move on. Our time in the hospital drew us even closer and there is a tenderness between us that is even more precious. Tom is reaching out more. I am not feeling so closed off. And I don't feel angry any more. Now the problem is I really don't want to loose him but I don't feel afraid of the feelings anymore. I continue to meditate on Prov 3:5-6. I can't seem to get' enough of it. It's the verse that is carrying me through. "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." What incredible peace lies in those words. What a life long journey to understand it and embrace it. Another verse came up last night to be an encouragement--Joshua 1:9, a verse I have used so often in teaching children: "Be strong and courageouse. Do not be terrified; do not be discouraged. For the Lord your God will be with you wherever you go." What an awesome and mighty God we serve and worship. Thank you, Lord, for being with us in the midst of this. Thank you for all those who are faithfully praying for us. We are becoming very dependent on those prayers and on the grace of our Lord.
Thursday started out quiet but when I took the trach tube out to clean it I really got scared. When I checked Tom's trach it looked like there was a hole/sore about the size of a dime a little way down. It was round and very bloody looking. I left the room just to take a deep breath and ask God to give me strength. I went back to check it and it was still the same. I called hospice and they said they would check with the doctor for me. Called Kemp and he said he would come right over. He said to call 911 NOW. I called but hung up but 911 has a way of finding you. They called me back and said they would be right here. Hospice called back and said to take Tom to ER. 911 arrived and after taking his vital signs said he was safe to transport so off to ER we went. Called the prayer chain on the way and asked them to pray. 3 hours later the ENT docs arrived. When they took a look they couldn't find what I was talking about. I don't know what happened--maybe there was clotted blood shaped in a perfect circle that Tom coughed up OR maybe God decided that this was more than we could handle (1 Cor 10:13) and healed it. It turned out to be a good visit because my greatest fear has been that I would do something wrong and cause harm to Tom. The docs said everything looked good and gave me some direction in how to take care of it even better. We came home exhausted again and went straight to bed for a nap. I had both of us really scared.
Friday we had nothing planned--just working on a few work projects that I am trying to finish. The hospice social worker called and asked to come by in the afternoon. We ended up having about a 2 hour conversation that was informative and helpful. I was feeling torn about hospice but after meeting with Chris decided that it would be a good thing to continue. We both were in bed by 8:00 pm. The first 3 times Tom needed help I got up with a smile but at 3:00 am told him that I really needed to get some sleep if he could manage without waking me. We got him well settled and didn't wake up again until 7:30 when I got up to give him meds and feed him. Decided to go back to bed and didn't get up until awaken by the phone at 10:30!
During those wakeful times (too bad you can't just go right back to sleep after being awaken!) I had a rather surprising realization. I realized that I have been angry. I know there are stages to grieving--denial, anger and acceptance--but I hadn't identified the anger part. I kept thinking that meant anger at God. The anger for me expressed itself in my thoughts of "if you're going to die then just do it because I don't want to go through the pain of doing this any more." That thought drove me crazy because I didn't want it but it kept coming back. Wouldn't you know that it would take another crisis to move on. Our time in the hospital drew us even closer and there is a tenderness between us that is even more precious. Tom is reaching out more. I am not feeling so closed off. And I don't feel angry any more. Now the problem is I really don't want to loose him but I don't feel afraid of the feelings anymore. I continue to meditate on Prov 3:5-6. I can't seem to get' enough of it. It's the verse that is carrying me through. "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." What incredible peace lies in those words. What a life long journey to understand it and embrace it. Another verse came up last night to be an encouragement--Joshua 1:9, a verse I have used so often in teaching children: "Be strong and courageouse. Do not be terrified; do not be discouraged. For the Lord your God will be with you wherever you go." What an awesome and mighty God we serve and worship. Thank you, Lord, for being with us in the midst of this. Thank you for all those who are faithfully praying for us. We are becoming very dependent on those prayers and on the grace of our Lord.
Wednesday, December 16, 2009
Feels good to laugh
It is 12:08 pm and I am still in my pajamas. Just finished "breakfast" as a matter of fact! Whoo-hoo, we got some sleep last night!!!! Tom has been taking half of the minimum amount of pain meds but was hurting last night and asked for a little more. I gave him the minimum amount and it not only helped with the hurt but helped with sleep, too. He woke at 2:00 am but it didn't take long to get him settled again and comfortable. Got up and gave him meds and fed him at 7:30, called our daughter-in-law to wish her a happy birthday (didn't answer so she had to suffer through listening me sing happy birthday in a sleep-husky voice!), and went back to bed. At 9:30 our son woke us saying if we were going to wake them then he was going to wake us! How did I know they were going to sleep in--I thought she would be up and on her way to work! Good to laugh!
Last night I ran to Fred Meyer while Yura stayed with Tom. Amazing what can be accomplished in an hour! Found a great 7-drawer table on wheels with top-extension-things on both sides. It works great for all the med supplies that were delivered. The floor is ALMOST clear again!
A friend called this morning and we shared some great laughter and a few tears. Laughter really is good medicine. It just feels so good!
Something else that is happening is that Tom is reaching out and touching me more. I think when he was having to concentrate so much on breathing and not choking he couldn't think of more than taking care of himself. Since the surgery he is more his old self giving gentle touches that say he loves me (AND that he is calmer!)
I think I'm ready for that nap I promised myself yesterday.
Last night I ran to Fred Meyer while Yura stayed with Tom. Amazing what can be accomplished in an hour! Found a great 7-drawer table on wheels with top-extension-things on both sides. It works great for all the med supplies that were delivered. The floor is ALMOST clear again!
A friend called this morning and we shared some great laughter and a few tears. Laughter really is good medicine. It just feels so good!
Something else that is happening is that Tom is reaching out and touching me more. I think when he was having to concentrate so much on breathing and not choking he couldn't think of more than taking care of himself. Since the surgery he is more his old self giving gentle touches that say he loves me (AND that he is calmer!)
I think I'm ready for that nap I promised myself yesterday.
Tuesday, December 15, 2009
A nap is comin'
We came home yesterday at noon--exhausted. The respiration therapy lady was here to meet us with more equipment. Tom needs a humidifier to keep moist air going into his lungs--he hates it. He is supposed to wear it around his neck. I worked out a system where it hangs close to him from the pole we use to hang the feeding tube bag on. It's also become our new background "music" with a pretty loud hum.
An hour later a nurse from hospice came to get him admitted to the program. It was a busy afternoon. By 7:00 pm we were both in bed. Tom was up and down until about 1:00 am when I said that I really had to get some sleep and it he really needed something let me know, otherwise I was going to get some sleep. It's hard to say that I need something when he needs so much but without sleep I verge on cranky and I don't want to live there. He was good for the rest of the night and I slept until 7:00.
There is so much medical supplies to find places for. I need to find a small dresser for the side of the bed. It will help my morale just to get everything organized--right now it's everywhere.
Thought I would get a nap today but forgot that the lady from medicare supplement insurance was coming. But it was a good meeting and we got everything decided. Stacey is her name and she really knows her stuff--made it all make sense for me.
I totally forgot to give Tom pain meds at noon. That was something they changed in the hospital and I don't have it in my brain yet--well, I do now! Tom was really hurting. Got to get a schedule written because meds have changed. Glad for effective drugs. Hopefully when he gets his stitches out on Monday the pain will be gone. He also does a swallow test on Monday to make sure that the esophogus/trachea separation is correct. If all looks good then it won't be long until he can try some of that coffee he's been waiting for.
Am now waiting for the hospice nurse to come who will be part of our hospice team. Not enough time to lay down today so I will look forward to a nap tomorrow--a long one!
An hour later a nurse from hospice came to get him admitted to the program. It was a busy afternoon. By 7:00 pm we were both in bed. Tom was up and down until about 1:00 am when I said that I really had to get some sleep and it he really needed something let me know, otherwise I was going to get some sleep. It's hard to say that I need something when he needs so much but without sleep I verge on cranky and I don't want to live there. He was good for the rest of the night and I slept until 7:00.
There is so much medical supplies to find places for. I need to find a small dresser for the side of the bed. It will help my morale just to get everything organized--right now it's everywhere.
Thought I would get a nap today but forgot that the lady from medicare supplement insurance was coming. But it was a good meeting and we got everything decided. Stacey is her name and she really knows her stuff--made it all make sense for me.
I totally forgot to give Tom pain meds at noon. That was something they changed in the hospital and I don't have it in my brain yet--well, I do now! Tom was really hurting. Got to get a schedule written because meds have changed. Glad for effective drugs. Hopefully when he gets his stitches out on Monday the pain will be gone. He also does a swallow test on Monday to make sure that the esophogus/trachea separation is correct. If all looks good then it won't be long until he can try some of that coffee he's been waiting for.
Am now waiting for the hospice nurse to come who will be part of our hospice team. Not enough time to lay down today so I will look forward to a nap tomorrow--a long one!
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