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.
Saturday, December 12, 2009
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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