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!
Saturday, December 12, 2009
A gentle embrace
I've been trying to nap but my mind just won't quite shut down. I've been trying to figure out a feeling. Friday when the carolers came I said that I felt very humbled but why? Part of it was being on the receiving end when so much of my life it's been about giving. But what I realized today was the feeling that it was God reaching down and saying how much He cared, giving us a special gift of His love, His gentle embrace--THAT is humbling. The ones who came are the ones who said "yes" to His calling never knowing how much it would mean to those who would receive.
OK, now that I've written it maybe I can get some quiet brain time. Whoops, Tom wants to play some cribbage. He beat me last night. I'll see if I can do better today.
OK, now that I've written it maybe I can get some quiet brain time. Whoops, Tom wants to play some cribbage. He beat me last night. I'll see if I can do better today.
Friday, December 11, 2009
The rest of Friday
The Respirtory Therapy teacher came back this afternoon but Tom was so comfortable and didn't really want to have the tube taken out right them. It all worked out for the best because Emily (another RT person) came later and she walked me through it and I DID IT! I can do it--I can take care of Tom! High fives all around--well, at least between Tom and me. Later today I cleaned it all by myself--getting more confident.
It has been decided that we will wait until Monday to go home. Hospice will take over Tom's health care and it will take till then to get it all put together. This will also give us the time to feel comfortable with all we need to do.
It is 9:00 and Tom is settled in for the night. I am right behind him. We are trying a new medication that might help--we are hopeful.
It has been decided that we will wait until Monday to go home. Hospice will take over Tom's health care and it will take till then to get it all put together. This will also give us the time to feel comfortable with all we need to do.
It is 9:00 and Tom is settled in for the night. I am right behind him. We are trying a new medication that might help--we are hopeful.
Friday - First half
I went to bed last night with the wrong expectations--I expected to get some sleep! From 9:00 pm until 6:30 am Tom was up every two hours. At 1:30 am I came out of a sound sleep in response to his tapping on the side of the bed and I would like to say it was because of being sleep (is it deprived or depraved???) but I actually said that I couldn't keep doing this. I felt bad for saying it but I didn't take it back--all I wanted to do was SLEEP! It made Tom feel bad and he wrote on his board the next time I got up (30 minutes later), "I'm sorry" Needless to say that made me feel even worse. Somehow I was able to not be cranky the rest of the night and gave him the kind of care I would want. The problem is that when he has to go to the bathroom he has to go RIGHT NOW so there's no waiting for a nurse to answer the call button. There might be help on the way--talked to a doctor today about it and she is coming back later to try to come up with a solution. I can't believe how well I am functioning today on so little sleep! People must be praying!
Occupational Therapy came to talk about what Tom might need at home. She will come back and help with his first shower.
Respiration Therapy teacher came by and I got a lesson on how to care for the "stoma" (hole in Tom's trach). I'm fine with most of it but putting the tube back in is difficult 'cause I know it hurts. Talked to Tom about it and he said it hurts when it goes in but the pain stops when in. He won't always need the tube but it will be in through this healing process so I gotta get it. He will be back this afternoon to give me another shot at it.
Hospice social worker (Jodi) showed up about the same time. We will be under their care from the time we leave the hospital. They coordinate with our doctors. We will have a nurse on call 24/7 plus a nurse's aid to help as needed. Just because hospice is getting involved it doesn't mean Tom has been given a prognosis for time left. We qualify because he has a disease he is not going to recover from so the important thing now is to make his life as good and full as it can be with the limitations we've been given.
And the day is only half gone!
Occupational Therapy came to talk about what Tom might need at home. She will come back and help with his first shower.
Respiration Therapy teacher came by and I got a lesson on how to care for the "stoma" (hole in Tom's trach). I'm fine with most of it but putting the tube back in is difficult 'cause I know it hurts. Talked to Tom about it and he said it hurts when it goes in but the pain stops when in. He won't always need the tube but it will be in through this healing process so I gotta get it. He will be back this afternoon to give me another shot at it.
Hospice social worker (Jodi) showed up about the same time. We will be under their care from the time we leave the hospital. They coordinate with our doctors. We will have a nurse on call 24/7 plus a nurse's aid to help as needed. Just because hospice is getting involved it doesn't mean Tom has been given a prognosis for time left. We qualify because he has a disease he is not going to recover from so the important thing now is to make his life as good and full as it can be with the limitations we've been given.
And the day is only half gone!
Thursday, December 10, 2009
Day 2 and a Surprise Gift
It's now Thursday night and we have finished Day 2 after surgery. Not much sleep last night between Tom needing something and the nurses needing to do something. The kicker was the nurse who brought me instructions for taking care of the new opening. Did she really think I would read it at that time?! (Today I think it's comical.) I was concerned when I went to bed that I wouldn't hear Tom when he needed something so we worked it out that he would tap the suction tube on the bed railing. Well, it worked. The first time he tapped it I jumped up before I was even fully awake!
The doctors came in about 7:00 and were, again, pleased with how Tom is healing. They cleaned the tube and put it back easily. Later in mo rning a respiration gal came in and took the tube out again but didn't put it back so easily. I requested that she not remove it again but let the doctors do it. Sure am getting assertive! But that also made me concerned about ME doing it. This afternoon when the doctor stopped back in he said that Tom will probably be going home on Saturday! While I am excited to get him home I know that that means I need to be able to take care of him. When I meet with the respiration teacher tomorrow I'm hoping I am a good student and that I don't hurt Tom.
We took 2 strolls through the halls--Tom showing off with his fancing footwork to anyone we passed. He also has the nurses charmed--are we surprised?
During my mostly sleepless night (ok, so I ate chocolate after dinner and I'm sure that didn't help but it sure tasted good!) a couple of Bible verses kept coming to mind. The first was Prov 3:5-6: 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. The other was I Cor 10:13: No temptation (trial) has seized you except what is common to man and God is faithful who will not let you be tempted (tried) beyond what you are able but with the temptation (trial) will provide a way of escape. I personallized both and enjoyed praying them back to God.
The other thing that moved from head to heart, from knowing it to really knowing I know it--we are not the body we live in. As parts are taken away from Tom it's his spirit that is so much more real than the frame it lives in. It's so clear that as his body fails him he lives on and because of his faith in Jesus Christ will never die. His body will but HE will just change addresses and have a new body that will never fail him. What blessed assurance.
It's also an incredible blessing to be able to spend this time with Tom--IF I can just get this new nursing skill mastered!
The most amazing thing just happened. Just after 7:30 pm 4 women and 2 young girls popped their heads in to ask if we would like to hear some Christmas music! Would we! They sang 4 or 5 songs for us. I cried. Tom directed. We learned that they were from Antioch and we know people in common. I told them I would be missing the children's musical on Sunday. This was like a gift to replace the one I will miss. Before they left we circled Tom's bed and they prayed for us. And OF COURSE Tom got a hug from each one before they left! It was a beautiful gift we were given and the bond we shared was much to be thankful for.
The doctors came in about 7:00 and were, again, pleased with how Tom is healing. They cleaned the tube and put it back easily. Later in mo rning a respiration gal came in and took the tube out again but didn't put it back so easily. I requested that she not remove it again but let the doctors do it. Sure am getting assertive! But that also made me concerned about ME doing it. This afternoon when the doctor stopped back in he said that Tom will probably be going home on Saturday! While I am excited to get him home I know that that means I need to be able to take care of him. When I meet with the respiration teacher tomorrow I'm hoping I am a good student and that I don't hurt Tom.
We took 2 strolls through the halls--Tom showing off with his fancing footwork to anyone we passed. He also has the nurses charmed--are we surprised?
During my mostly sleepless night (ok, so I ate chocolate after dinner and I'm sure that didn't help but it sure tasted good!) a couple of Bible verses kept coming to mind. The first was Prov 3:5-6: 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. The other was I Cor 10:13: No temptation (trial) has seized you except what is common to man and God is faithful who will not let you be tempted (tried) beyond what you are able but with the temptation (trial) will provide a way of escape. I personallized both and enjoyed praying them back to God.
The other thing that moved from head to heart, from knowing it to really knowing I know it--we are not the body we live in. As parts are taken away from Tom it's his spirit that is so much more real than the frame it lives in. It's so clear that as his body fails him he lives on and because of his faith in Jesus Christ will never die. His body will but HE will just change addresses and have a new body that will never fail him. What blessed assurance.
It's also an incredible blessing to be able to spend this time with Tom--IF I can just get this new nursing skill mastered!
The most amazing thing just happened. Just after 7:30 pm 4 women and 2 young girls popped their heads in to ask if we would like to hear some Christmas music! Would we! They sang 4 or 5 songs for us. I cried. Tom directed. We learned that they were from Antioch and we know people in common. I told them I would be missing the children's musical on Sunday. This was like a gift to replace the one I will miss. Before they left we circled Tom's bed and they prayed for us. And OF COURSE Tom got a hug from each one before they left! It was a beautiful gift we were given and the bond we shared was much to be thankful for.
Wednesday, Day 1 after surgery
Returned to the hospital at 7:00 am. Tom had a pretty good night. They gave him something to help him sleep. I also took something to help me sleep and woke up feeling ready to go at 5:00 am. Kylisa picked me up and drove me to the hospital so I wouldn't have to put a car in the parking garage. Physical Therapy came and decided he really didn't need them. (His dance moves are just fine!) Occupational Therapy will work with us while we are here and when we go home to help us adjust to taking care of this new "hole." Nurses are great--Michelle, Meghan and Farrah.
Left ICU at 1:30 for a "room of our own." It's a little one but we will manage. They think we will be here through the weekend. I have moved in--this is really DOWNSIZING!
Tom's neck is swollen and very bruised looking but the doctors are happy with how it looks so we are happy, too. Tom has been more communicative via his white board than he has been since he started using it. I think it's because he doesn't have to think about breathing and I love it.
Tonight I am trying to figure out Itunes and Ipods and Internet connections. THAT'S what I want for Christmas--an organized Ipod! Kemp is bringing a small humidifier for the room--One of the hardest parts is the dry air and my nose!
No computer hookup yet so will post this when I get that figured out.
Left ICU at 1:30 for a "room of our own." It's a little one but we will manage. They think we will be here through the weekend. I have moved in--this is really DOWNSIZING!
Tom's neck is swollen and very bruised looking but the doctors are happy with how it looks so we are happy, too. Tom has been more communicative via his white board than he has been since he started using it. I think it's because he doesn't have to think about breathing and I love it.
Tonight I am trying to figure out Itunes and Ipods and Internet connections. THAT'S what I want for Christmas--an organized Ipod! Kemp is bringing a small humidifier for the room--One of the hardest parts is the dry air and my nose!
No computer hookup yet so will post this when I get that figured out.
Tuesday, December 8, 2009
Day of Surgery
We checked in at our appointed time of 7:00 am. Then we sat and waited for an hour for them to take us to surgery prep. Everyone was very kind. Then our doctor came in and informed us that he would need a few minutes before surgery got started so he could check the text book to make sure he knew how to do the procedure! Wouldn't you know--a doctor with the same sense of humor as the patient! Tom was taken to surgery at 9:10.
I went to the surgery waiting room which was very cool as in cold. There wasa volunteer man sitting at the desk and I mentioned that it was cold and he offered to get me a blanket. There were about 6 other people in the room and I suggested that we all needed one. He responded with WARM blankets for everyone. I enjoyed reading "The Christmas Story" by Glenn Beck and dozing off for the next 2 1/2 hours.
At 11:45 they called to say Tom was out of surgery. Dr Merati soon came in to tell me that everything went well and he was pleased. Half an hour later they took me back to be with Tom. He was alert and calm. Then his heart rate went up. They are not sure why and are watching it. I said it was just because his wife was so near!
Tom was taken to ICU as a precaution for 24 hours. It is so amazing to see Tom so calm and at peace after struggling 24/7 with his breathing and trying to avoid choking. His color is good. His mouth is dry. He says his nose feels funny--no air going through it. That will take some getting used to. The hole in his neck will also take some getting used to. The next 5 days we'll receive instruction.
When I first saw the hole I was feeling apprehensive about being up to the challenge but as the day went on I am feeling less queasy and trust that by the end of the week I'll know what I'm doing--that's what I'm praying for.
Looking into Tom's face tonight as he rested was so precious. I love him so much and look forward to having him home again. What is it about difficult times that bring you closer together. We're both looking forward to that first cup (sip, whatever) of coffee coming soon. Since the esophagus and trachea are completely separated there is no danger of choking or aspirating so he will be able to try some things in his mouth again and see what happens. Tom can't wait! Neither can I.
I went to the surgery waiting room which was very cool as in cold. There wasa volunteer man sitting at the desk and I mentioned that it was cold and he offered to get me a blanket. There were about 6 other people in the room and I suggested that we all needed one. He responded with WARM blankets for everyone. I enjoyed reading "The Christmas Story" by Glenn Beck and dozing off for the next 2 1/2 hours.
At 11:45 they called to say Tom was out of surgery. Dr Merati soon came in to tell me that everything went well and he was pleased. Half an hour later they took me back to be with Tom. He was alert and calm. Then his heart rate went up. They are not sure why and are watching it. I said it was just because his wife was so near!
Tom was taken to ICU as a precaution for 24 hours. It is so amazing to see Tom so calm and at peace after struggling 24/7 with his breathing and trying to avoid choking. His color is good. His mouth is dry. He says his nose feels funny--no air going through it. That will take some getting used to. The hole in his neck will also take some getting used to. The next 5 days we'll receive instruction.
When I first saw the hole I was feeling apprehensive about being up to the challenge but as the day went on I am feeling less queasy and trust that by the end of the week I'll know what I'm doing--that's what I'm praying for.
Looking into Tom's face tonight as he rested was so precious. I love him so much and look forward to having him home again. What is it about difficult times that bring you closer together. We're both looking forward to that first cup (sip, whatever) of coffee coming soon. Since the esophagus and trachea are completely separated there is no danger of choking or aspirating so he will be able to try some things in his mouth again and see what happens. Tom can't wait! Neither can I.
Saturday, December 5, 2009
Where's your focus?
I keep thinking every day that I am going to sit down and write and then another day goes by and it hasn't happened but I am not going to bed tonight until I have gotten some of what has been going on in my head down and out. It's been a week full of many emotions and searching.
I don't remember anything else that my pastor said last Sunday except a question that he asked--"Where is your focus?" The power of that simple question has had me wrestling and thinking all week. Sunday afternoon I spent sinking in a pity party until THAT QUESTION surfaced again and my answer had to be that my focus was on me--whoops! It was incredible how fast my mood/emotions/spirit lifted when I started singing praise songs. During the night I thought back on what had occured--a lesson I keep learning over and over--it's a minute by minute kind of thing. A funny kind of illustration came to mind--it's like a football team. If the quarterback does his own thing, focusing on himself the game becomes chaotic BUT when he follows the direction and guidance of the coach the plays make sense. A purpose and a plan is realized.
I don't know what God is doing with us but I know He does know. This is not a pause in our lives, a time out--we are doing life. I'm not being taken out of life. I'm being given the privilege of caring for a very special man. All this from being reminded to check where my focus is. It's either on me or it's on Jesus. If it's on me I'll never be satisfied or content. When it's on Jesus I experience peace and joy and an amazing contentment. Circumstances are the same. I'm not.
We're thankful that Tom has had no serious breathing episodes the last 12 days--just 2 more before the surgery. I asked him if he was nervous about it and he said, "no"--just want to get it done.
Today we went to the ALS Support Group--meets on the first Saturday of the month. What a wonderful group of people who are bonded together by a common battle. Today there was a lot of laughter shared. Very determined people to live life to the fullest. Inspiring.
I don't remember anything else that my pastor said last Sunday except a question that he asked--"Where is your focus?" The power of that simple question has had me wrestling and thinking all week. Sunday afternoon I spent sinking in a pity party until THAT QUESTION surfaced again and my answer had to be that my focus was on me--whoops! It was incredible how fast my mood/emotions/spirit lifted when I started singing praise songs. During the night I thought back on what had occured--a lesson I keep learning over and over--it's a minute by minute kind of thing. A funny kind of illustration came to mind--it's like a football team. If the quarterback does his own thing, focusing on himself the game becomes chaotic BUT when he follows the direction and guidance of the coach the plays make sense. A purpose and a plan is realized.
I don't know what God is doing with us but I know He does know. This is not a pause in our lives, a time out--we are doing life. I'm not being taken out of life. I'm being given the privilege of caring for a very special man. All this from being reminded to check where my focus is. It's either on me or it's on Jesus. If it's on me I'll never be satisfied or content. When it's on Jesus I experience peace and joy and an amazing contentment. Circumstances are the same. I'm not.
We're thankful that Tom has had no serious breathing episodes the last 12 days--just 2 more before the surgery. I asked him if he was nervous about it and he said, "no"--just want to get it done.
Today we went to the ALS Support Group--meets on the first Saturday of the month. What a wonderful group of people who are bonded together by a common battle. Today there was a lot of laughter shared. Very determined people to live life to the fullest. Inspiring.
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