Jaren had his feeding tube placed on September 25th, it was doing really, really well he started gaining weight and then the Tuesday after it was placed he became dehydrated and throwing up so I left work after his aid text me that he was throwing up so I got to a point at work that I could leave and went home to check on him, he looked horrible, I checked his blood sugar and it was 495, I gave him some insulin and sat there with him for a while and talked to him and 30 mins later I checked his sugars again and they were higher they were up over 500 I asked him what he wanted me to do. I told him I could take him in to the ER or I could go back to work and see if the insulin is working, he said he didn't care he just kept getting worse and worse so I didn't dare go back to work and I asked him again if he wanted to go to the ER and he said "yes, please take me in" I took him in and they got him to a room pretty quick, they started and IV and some insulin and did some blood work and the numbers were not good, he was in Diabetic Ketoacidosis so they told me that they had to admit him but not to a regular room he had to go to the ICU, It was stressful. I was already overwhelmed trying to learn the new feeding tube and how it worked and now this? they took really good care of us though. When he got settled in his room in the ICU I decided to go eat some dinner I hadn't eaten all day because I was at work and I usually come home and eat after I am done working. I went down to the cafeteria and ordered a salad they are usually pretty good there, I went to pay for it and my card declined I was so embarrassed luckily I had a little bit of cash in my purse. I started bawling and I couldn't stop, I had so many emotions I was feeling, I was feeling guilty because I had started another job as a crossing guard to help with finances and I was hardly home that few days after the tube was placed and that day he was sick I didn't have time to really help him that morning because I was going crazy. I should have been home that day and maybe he wouldn't have been sick or I could have caught it in time before it got to the point where he had to be hospitalized. I know, I know it couldn't have been helped, BUT I still can't help the way I was feeling. He started to get better once they got his sugars under control and they decided he could go to a regular floor, they put us on the 8th floor which was really good because my sister is a RN on that floor and she was working that day and I got to go up to her floor and eat lunch with her which was really fun!! so we got up to the 8th floor and the nurses were really nice, and helpful. My sister came in to sit with me after her shift and they changed nurses and my sister was able to hand pick his nurse so I knew he would get the best care. It was getting late by that time and so I asked my sister to stay with me so I didn't have to walk out to my car by myself, so they came in to do his vitals and to feed him through the feeding tube and he had to go to the bathroom, both my sister and I told the CNA Tech that he had dementia and she just laughed and said "don't we all" nobody believes me because he is young and he LOOKS normal. After the restroom break he didn't want to get back in bed so the good nurse didn't want to set the bed alarm until he was in it but I needed to get home to be with the kids and to get SOME sleep, so I went back the next morning and they tell me that he was ready to go home that night and tried to follow me out and security brought him back upstairs. I asked Jaren how far he made it out and he said they found him in the parking lot. I couldn't be mad because they did find him and he was not harmed and I couldn't help but laugh. I had told the nurse that he usually doesn't wander, ooops I guess I am wrong, but now when he is in the hospital I don't feel like I will be able to leave him. I was upset though that the CNA didn't believe me or my sister and he wandered, that was a little irritating. But not worth being that upset I have other things to worry about.
He finally got home and he was doing really well. The home health nurse was coming in still 3 times a week and admitted to me that even he didn't really see the REAL situation until he started coming more when I wasn't home and the questions that Jaren couldn't answer or answer wrong, he said that he visualized the situation from the first to know very different and he can see now that Jaren really needs help, FINALLY someone gets it!! Anyway, I took him for a follow-up visit with the family Dr on October 16th and he said looking at his blood work from the different times in the last year he seems to be anemic, really! one more thing to keep track of. He suggested waiting another month and redo his blood work and see what the numbers say and they will decide what to do. That would make sense why he is so worn down and so pale and always exhausted, then the next day came and he just wasn't acting himself, his aid came over to help shower him and I asked him to look at his tube placement incision and see what he thought, he said it looks infected so after the shower we decided to go back to the ER to get it checked just to be safe, I didn't want to take him to Instacare because I don't think they have the equipment to handle that kind of stuff. So off to the ER we went, glad we did it was infected with a fever and all they did do a CAT scan to make sure there was not infection inside the stomach, thank goodness it came back ok, they did a round of IV antibiotics and gave him some through his tube before we left and sent us home with 2 antibiotic prescriptions so I have been breaking up pills and putting them through his tube 4 times a day. We had an appointment with the Nutrition Support team that placed the tube and that was on Tuesday last week, they numbed it and pulled some granual tissue out of the incision and did some other things to it and told me to come over to the table so that I could see what was happening, so I walked over and she started poking around in it with some sort of a stick thing and I started feeling so weird and I could hear people but I had no clue what they were saying and my eyes were closing in and everything felt like my head was spinning and I about passed out I luckily had the feeling to go sit down so I walked over to the chair and sat down, what a horrible feeling. I have never felt like that before. I am sure I was as white as a ghost because when I finally came out of it I could feel the color come back to my face. He is doing good now and still gaining weight so hopefully he can stay healthy through the next couple of months. The time between fall and winter seasons are the worst it seems for him, he gets really ill and then he seems to level off again when it gets warmer. I guess we will see what will happen.
Monday, October 27, 2014
Saturday, September 27, 2014
So many ups and downs
School has begun and the kids are all doing pretty good with keeping up with homework and good grades so far. They all really like their teachers and RaKelle is loving the high school social stuff and football games.
I wasn't sure how to write some of the things that I have been feeling lately. I was still concerned with Jaren not eating and not swallowing his pills so we went to our appointment with the GI Doctor and I knew he was going to tell me that we should consider a feeding tube for his nutrients and his medications, even though I knew it was coming it didn't lessen the blow any, it is still a slap in the face that things are going downhill at a fast rate. The Dr's have all been really good about answering all of my questions and about giving me the information I have needed to make my decisions. I think by far that this decision has been the hardest one yet. I told the Dr I would not make a decision on my own that I had to go home and talk it over with my kids before I would make the final decision. We had a family meeting that night and talked it over and they all asked if they could have some time to think about it and have another meeting later in the week to discuss the options and what their feelings were, so that is what we did, needless to say it was a very emotional week for all of us. RaKelle had a meltdown, Ashlyn got really mean and Braxton got really, really sick with fever and just wanting to lay on the couch he was sick for 5 days. RaKelle came and talked to me and we had a really good talk she expressed how hard it was at school to listen to people in the hall complain about how their dad's are so over protective and she just wished that her dad knew how to be over protective. Ashlyn finally calmed down and she is doing much better. Braxton finally got better. The Friday after we found out about the tube we celebrated Jaren's 40th birthday, he swears up and down he is 31 so we just go with it, instead of having a party with friends and family we were discussing the feeding tube.
We finally came to the decision to have the tube placed. I know some people wonder why we chose to have a feeding tube, they wonder why we want to prolong his life. I thought about that as well and talked with more than one of his Dr's and they were very supportive with whatever decision that we made. They all said that he is still functioning to a point where his nutrition is very important and if he wasn't getting the nutrition that he needs it would start eating his muscles and it would be more painful. Our family Dr made a very good point as well, he said you aren't prolonging his life we are treating the symptoms and helping him have a good quality for the end of life not the quantity. I didn't look at it that way until he said something. I am so thankful for the Dr's that we have working with him and the way they treat him, and the support that they give to me.
The G tube (Gastric feeding tube) was placed on Thursday September 25, 2014 it was a looooong day we had to be at the hospital at 5am. The surgery went very smooth and it didn't even take them as long as they anticipated and they were very pleased with how it went. The surgeon was very good and he said that the surgery was better than they expected it to be. He came home the same day and did really well. We now have to get used to a new "normal" for feeds and meds and dealing with everything. When he was in post op he kept saying "ow, my belly hurts" I would then say, 'yes, you had surgery your belly will hurt for a few days, they had to cut you a little bit" he would look at me and growl and say "why, did they do that?" I had to explain it over and over again that it will help him eat and get the medicine he needs. When we got home the kids asked him why his belly hurt and he would say "because they thought I was a toy or a doll so they cut me all up" at least it didn't take his sense of humor yet!! he is finally understanding a little bit but is very vocal about the pain and very ornery sometimes.
We are holding a Bake Sale this coming Friday October 3, 2014 for the AFTD like the one that we had last year. The kids have done a lot to get ready for this and hopefully it will pay off.
I wasn't sure how to write some of the things that I have been feeling lately. I was still concerned with Jaren not eating and not swallowing his pills so we went to our appointment with the GI Doctor and I knew he was going to tell me that we should consider a feeding tube for his nutrients and his medications, even though I knew it was coming it didn't lessen the blow any, it is still a slap in the face that things are going downhill at a fast rate. The Dr's have all been really good about answering all of my questions and about giving me the information I have needed to make my decisions. I think by far that this decision has been the hardest one yet. I told the Dr I would not make a decision on my own that I had to go home and talk it over with my kids before I would make the final decision. We had a family meeting that night and talked it over and they all asked if they could have some time to think about it and have another meeting later in the week to discuss the options and what their feelings were, so that is what we did, needless to say it was a very emotional week for all of us. RaKelle had a meltdown, Ashlyn got really mean and Braxton got really, really sick with fever and just wanting to lay on the couch he was sick for 5 days. RaKelle came and talked to me and we had a really good talk she expressed how hard it was at school to listen to people in the hall complain about how their dad's are so over protective and she just wished that her dad knew how to be over protective. Ashlyn finally calmed down and she is doing much better. Braxton finally got better. The Friday after we found out about the tube we celebrated Jaren's 40th birthday, he swears up and down he is 31 so we just go with it, instead of having a party with friends and family we were discussing the feeding tube.
We finally came to the decision to have the tube placed. I know some people wonder why we chose to have a feeding tube, they wonder why we want to prolong his life. I thought about that as well and talked with more than one of his Dr's and they were very supportive with whatever decision that we made. They all said that he is still functioning to a point where his nutrition is very important and if he wasn't getting the nutrition that he needs it would start eating his muscles and it would be more painful. Our family Dr made a very good point as well, he said you aren't prolonging his life we are treating the symptoms and helping him have a good quality for the end of life not the quantity. I didn't look at it that way until he said something. I am so thankful for the Dr's that we have working with him and the way they treat him, and the support that they give to me.
The G tube (Gastric feeding tube) was placed on Thursday September 25, 2014 it was a looooong day we had to be at the hospital at 5am. The surgery went very smooth and it didn't even take them as long as they anticipated and they were very pleased with how it went. The surgeon was very good and he said that the surgery was better than they expected it to be. He came home the same day and did really well. We now have to get used to a new "normal" for feeds and meds and dealing with everything. When he was in post op he kept saying "ow, my belly hurts" I would then say, 'yes, you had surgery your belly will hurt for a few days, they had to cut you a little bit" he would look at me and growl and say "why, did they do that?" I had to explain it over and over again that it will help him eat and get the medicine he needs. When we got home the kids asked him why his belly hurt and he would say "because they thought I was a toy or a doll so they cut me all up" at least it didn't take his sense of humor yet!! he is finally understanding a little bit but is very vocal about the pain and very ornery sometimes.
We are holding a Bake Sale this coming Friday October 3, 2014 for the AFTD like the one that we had last year. The kids have done a lot to get ready for this and hopefully it will pay off.
Sunday, August 24, 2014
It has been a long time
I can't believe how long it has been since I have updated. I am happy to say that I got a new job I am still going to be doing reading programs but at a different school, I will now be working at West Jordan Elementary, the school the Braxton goes to I am hoping that this will help him be able to go to school a lot more and not be sick so much from leaving Jaren.
I can't believe school is about to start again, RaKelle will be in 10th grade and she starts High School this year!! I am a little nervous for her but I know she will do great, she is working on getting her Learner's permit and she is loving the driving experience. I am honestly looking forward to when she will get her license, because I won't have to be the only driver anymore.
Ashlyn is about to start 8th grade and is very excited. She has some really good classes and some good friends that she can't wait to hang out with again this year. She loves school, which is so different for her she hated elementary but she loves middle school hopefully this year will be the same and she will love it!!
Braxton is starting the 5th grade and at back to school night we found out that my office is right next to his classroom and he is worried about that but I told him if he was good and obeyed the rules he has nothing to worry about.
Jaren will be home alone again in the mornings while I am at work, I am a little worried how he is going to react the first couple weeks change is really hard on him. He has been declining quite a bit this summer, not just his memory but he doesn't want to eat, his stomach hurts all the time which is making his diabetes crazy, his A1C which is a 3 month blood sugar average was 6.8 which normal people is perfect but for him it is scary it means he is having a lot of low blood sugars that we are not aware of. He has lost 20 pounds in about 8 months. I made an appointment with the GI doctor but he didn't have any openings until September 8, so we have to wait until then. Hopefully we can get some answers or maybe some other options to help him get the nutrition that he needs. His memory is getting a lot worse and the pain in his body is almost unbearable, sometimes he can't even feel his feet and can't get out of bed, he said his stomach pain is like the Neuropathy in his hands and feet so I am not sure if there are nerves in the stomach that are being attacked that make his stomach hurt. I pray every night that he will be able to handle being home alone while I am working because I don't have a choice on the matter I have to work to keep us afloat. I am working on getting his aid to come in the morning while I am gone so that he isn't alone the entire time.
I can't believe school is about to start again, RaKelle will be in 10th grade and she starts High School this year!! I am a little nervous for her but I know she will do great, she is working on getting her Learner's permit and she is loving the driving experience. I am honestly looking forward to when she will get her license, because I won't have to be the only driver anymore.
Ashlyn is about to start 8th grade and is very excited. She has some really good classes and some good friends that she can't wait to hang out with again this year. She loves school, which is so different for her she hated elementary but she loves middle school hopefully this year will be the same and she will love it!!
Braxton is starting the 5th grade and at back to school night we found out that my office is right next to his classroom and he is worried about that but I told him if he was good and obeyed the rules he has nothing to worry about.
Jaren will be home alone again in the mornings while I am at work, I am a little worried how he is going to react the first couple weeks change is really hard on him. He has been declining quite a bit this summer, not just his memory but he doesn't want to eat, his stomach hurts all the time which is making his diabetes crazy, his A1C which is a 3 month blood sugar average was 6.8 which normal people is perfect but for him it is scary it means he is having a lot of low blood sugars that we are not aware of. He has lost 20 pounds in about 8 months. I made an appointment with the GI doctor but he didn't have any openings until September 8, so we have to wait until then. Hopefully we can get some answers or maybe some other options to help him get the nutrition that he needs. His memory is getting a lot worse and the pain in his body is almost unbearable, sometimes he can't even feel his feet and can't get out of bed, he said his stomach pain is like the Neuropathy in his hands and feet so I am not sure if there are nerves in the stomach that are being attacked that make his stomach hurt. I pray every night that he will be able to handle being home alone while I am working because I don't have a choice on the matter I have to work to keep us afloat. I am working on getting his aid to come in the morning while I am gone so that he isn't alone the entire time.
Friday, April 4, 2014
I am so ready for Spring!
Here at the Gordon house, we are so ready for spring. I have to say though we haven't had the illness at our house this winter like we usually do. Jaren wasn't in the hospital at all this winter. He did end up in the hospital the middle of March, he was fine all weekend and one Sunday afternoon he said I don't feel so good, I took his blood sugars and he was high so I gave him some insulin and he wasn't feeling any better so I took it again and it had only gone down by 100, he started vomiting and couldn't stop so I took him to the ER so that he could be rehydrated because usually by the time he starts throwing up he is dehydrated and I can't get it under control myself. When we got to the ER they were really busy but they started the IV and he started feeling better but they couldn't get his sugars to go down and they were worried about some of his blood work, his Anion Gap was opened and acid level wasn't going down either so they decided to admit him to the ICU. It was a little stressful because it was about 1 am, when they got us up to his room the doctor came in and asked Jaren " what brings you here today?" Jaren looked at me and looked back at the doctor and said "um, a van" the doctor started laughing thank goodness and said "I guess I should have asked that a different way." I had to laugh myself it was actually really funny. I then had to explain to them that he suffers from Dementia because of the MLD and I had to explain what MLD was because not many people including doctors know anything about MLD. Since that hospital visit he just hasn't been himself, his sugars have been out of control and I can't seem to keep him under 300. I went to see my counselor and told him about it and he told me that the MLD could be making the brain do things that the insulin is being affected and not working correctly. I don't know what to do about that besides just taking sugars and giving insulin. The pain has been so bad as well that he has had to have major pain killers to keep it under control.
It has been a really tough year so far. RaKelle had to have surgery on her knee to finally fix it. I really didn't realize how much she helps until she couldn't. She is awesome!! I was focused on her a lot and I was trying to take care of Jaren and it was really hard. I didn't feel like I could leave him alone while we were at the hospital so I asked some neighbors to check on him. It was a LONG day but we made it through, she is doing really well one more week and her brace gets to come off. When Jaren was in the hospital I was so focused on getting Jaren better that I kind of let her fall to the back burner and she was sitting in the hospital with me and she put her foot up to elevate it and her whole foot was swollen I felt so bad.
Jaren has not been sleeping at night he wanders the house and wakes everyone up. He gets confused on where to sleep. Last week he woke Braxton up because he wanted to "talk" at midnight. Braxton didn't have the heart to tell him he was tired and to go back to bed so he sat up and listened and talked to him. I asked what he talked about and he told me that he said "your mom is so pretty I want to marry her." and Braxton told him he was already married to me and Jaren told him he wants to get married to me again. He said that Jaren kept talking about Ashlyn and how sometimes she is not nice, and he was talking about RaKelle and how tall she is. He talked a little bit about nintendo. Needless to say I couldn't get him up on time and he was late for school. I thought it was super cute of Braxton to stay up with his dad and just listen to him.
I get overwhelmed when they miss a lot of school but I feel like that is not something I want to fight them on. I feel like sometimes they just can't go to school and if they do they won't be able to concentrate so it really doesn't do them any good. I know they have to send letters home when they have had to many absences but I can't handle when I read them, that just makes one more thing I have to work out with the administration and it is overwhelming and frustrating even though they are super nice about it. I am trying my best to raise my kids and take care of him sometimes it is not as stressful as others and sometimes it gets to the point where I just want to run and hide and cry a lot. Sometimes I just want to stay in bed and sleep until it all goes away, but I know that is not possible.
It has been a really tough year so far. RaKelle had to have surgery on her knee to finally fix it. I really didn't realize how much she helps until she couldn't. She is awesome!! I was focused on her a lot and I was trying to take care of Jaren and it was really hard. I didn't feel like I could leave him alone while we were at the hospital so I asked some neighbors to check on him. It was a LONG day but we made it through, she is doing really well one more week and her brace gets to come off. When Jaren was in the hospital I was so focused on getting Jaren better that I kind of let her fall to the back burner and she was sitting in the hospital with me and she put her foot up to elevate it and her whole foot was swollen I felt so bad.
Jaren has not been sleeping at night he wanders the house and wakes everyone up. He gets confused on where to sleep. Last week he woke Braxton up because he wanted to "talk" at midnight. Braxton didn't have the heart to tell him he was tired and to go back to bed so he sat up and listened and talked to him. I asked what he talked about and he told me that he said "your mom is so pretty I want to marry her." and Braxton told him he was already married to me and Jaren told him he wants to get married to me again. He said that Jaren kept talking about Ashlyn and how sometimes she is not nice, and he was talking about RaKelle and how tall she is. He talked a little bit about nintendo. Needless to say I couldn't get him up on time and he was late for school. I thought it was super cute of Braxton to stay up with his dad and just listen to him.
I get overwhelmed when they miss a lot of school but I feel like that is not something I want to fight them on. I feel like sometimes they just can't go to school and if they do they won't be able to concentrate so it really doesn't do them any good. I know they have to send letters home when they have had to many absences but I can't handle when I read them, that just makes one more thing I have to work out with the administration and it is overwhelming and frustrating even though they are super nice about it. I am trying my best to raise my kids and take care of him sometimes it is not as stressful as others and sometimes it gets to the point where I just want to run and hide and cry a lot. Sometimes I just want to stay in bed and sleep until it all goes away, but I know that is not possible.
Wednesday, January 29, 2014
Advocacy Day
The kids and I had the opportunity to go up and speak at the State Capital. What a great experience for us. The kids did an amazing job telling their story and telling how it really is. We were able to let people know how hard it is.
The Deseret News was there and they did an awesome article on our family, and they sent out a photographer to our house to capture us taking care of Jaren. If you would like to check it out go to http://www.deseretnews.com/article/865595003/Wife-caregiver-says-families-living-with-dementia-need-support.html
I don't know if I will make any difference now but hopefully in the future it will help others.
I went to the grocery store yesterday to get a printed copy of the paper and we were on the very front page in the headlines. It said to read the article on B1 so I went to it and a huge picture of Jaren and the girls. There were a few more in the article as you read on. The kids were very excited.
Thank you Deseret News for getting the word out and for you wonderful story!
The Deseret News was there and they did an awesome article on our family, and they sent out a photographer to our house to capture us taking care of Jaren. If you would like to check it out go to http://www.deseretnews.com/article/865595003/Wife-caregiver-says-families-living-with-dementia-need-support.html
I don't know if I will make any difference now but hopefully in the future it will help others.
I went to the grocery store yesterday to get a printed copy of the paper and we were on the very front page in the headlines. It said to read the article on B1 so I went to it and a huge picture of Jaren and the girls. There were a few more in the article as you read on. The kids were very excited.
Thank you Deseret News for getting the word out and for you wonderful story!
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