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.
Wednesday, December 16, 2009
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.
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