Well, I don't like afternoon appts. especially when the ambulance service is late getting us to our appt. and then this doctor's office that we went to today was not accomodating like the other places we have been, since we have to be transported by ambulance. AND the EMS personnel left us there, and this is the first time that has happened. The offices usually get us in and out quickly and the EMS people stay right there and bring us back home. Well, today that didn't happen.
Anyhow, the dr. says we may never know why Preston has had jaundice. It could be meds., of course, but he felt the medication we stopped was not the reason, but if it isn't, why does he seem to be getting better? He is not quite as yellow plus his stools are back to normal color. But since the meds. is getting out of his system, Preston has started shaking again. He had quite a long time of shaking today when we first got there. He was having what the neurologists called a "storm" so now we have to get him on another medication for that. Oh me! So in a.m. I will call neurosurgeon and see what they say. But I just remembered, he is not in his office tomorrow.
We are going to Greenville Memorial to have an ultrasound done on Thurs. a.m. and more blood work to see if the levels have come down any. We have to be there at 9:30. I dread it soooo bad. It is hard when you have to wait for someone to come and get you, and wait for someone to bring you back home, etc. But such is life right now.
So that is all I know right now.
Over and out for this time.
Tuesday, July 31, 2007
Saturday, July 28, 2007
My trivia question for today is
How long can a person's liver not be functioning properly, before that person will get very sick???? Preston is still very jaundiced, I mean he is yellow! But he is not sick. If the bile is not leaving his body, why isn't he sick from it? I guess we will find out Tues. He goes to the gastro-interologist on Tues. afternoon. He is very excited to be riding again to the dr. and back in the ambulance. He enjoys that. I just hope he doesn't get sick from this, and that it will go away. We don't need any more hospital stays or a bunch of tests run, which is what he will have to have if this doesn't clear up. Things are doing well, why this????
Junior and I got him up today and got him in the shower, and he sat on his shower chair and we gave him a good shower and washed his hair. He said it felt good. We are going to have to do this at least 2 times/week. Soon I will have help and we can do it more often, during the day. By evening, he is very tired. He goes to sleep about 8 p.m. or shortly afterward. He still has a lot of healing to do, and maybe this malfunctioning liver problem is attributing to his tiredness. But he is talky and listens to his stories on cd or tape every day. The pastor came today and he really enjoyed that. He visited with him. It is sooo nice he can talk again.
Gotta get to bed.
Junior and I got him up today and got him in the shower, and he sat on his shower chair and we gave him a good shower and washed his hair. He said it felt good. We are going to have to do this at least 2 times/week. Soon I will have help and we can do it more often, during the day. By evening, he is very tired. He goes to sleep about 8 p.m. or shortly afterward. He still has a lot of healing to do, and maybe this malfunctioning liver problem is attributing to his tiredness. But he is talky and listens to his stories on cd or tape every day. The pastor came today and he really enjoyed that. He visited with him. It is sooo nice he can talk again.
Gotta get to bed.
Thursday, July 26, 2007
Interesting tidbit!
Well, my sister will probably kill me, LOL but I have to tell you that today is her birthday. I know the day is almost over, but nonetheless it is her birthday until midnight. Well, what is interesting is that she and I are NOW THE SAME AGE, until my birthday. I think that is neat. Now I am not going to tell you how old we are. But on Aug. 11th I will then change my age, and we will no longer be the same age. But I enjoy it the 2 weeks that we are!
Preston is still very jaundice. I called the neurosurgeon today to see if they had made him an appt. yet with the proper doctor, but they didn't even call me back. I guess they had nothing to tell me, so didn't call me??? I just don't want him to get real sick and start throwing up etc., and we end up taking him to the ER. I want to avoid the ER if at all possible.
He was up sitting and rocking in his chair twice today. He had OT and PT. Tomorrow he has speech and the nurse comes. His blood pressure is doing fine now that he is off his meds. I am still hoping and praying that it was the meds. and eventually it will all be flushed out of his body and we can go on with life! Things are going well, except for the jaundice.
Junior got off after about 9 hrs. instead of 10 today and I was able to go to town. I ran by a thrift store and met up with one of my friends, and all books were 4/$1. I bought several to sell. I didn't get any put on tonight. I vowed to go to bed earlier and it is now 10:25 and I am still up. I worked on altering a black & white composition book for someone to use as a journal. I hope to finish it tomorrow, only have one little thing left to do.
So I am off to bed so I can get up earlier in a.m. We need to clean house tomorrow. It doesn't even get dusted every week now, since Preston has been sick. Oh well, the dust will be here when we are dead and gone.
Preston is still very jaundice. I called the neurosurgeon today to see if they had made him an appt. yet with the proper doctor, but they didn't even call me back. I guess they had nothing to tell me, so didn't call me??? I just don't want him to get real sick and start throwing up etc., and we end up taking him to the ER. I want to avoid the ER if at all possible.
He was up sitting and rocking in his chair twice today. He had OT and PT. Tomorrow he has speech and the nurse comes. His blood pressure is doing fine now that he is off his meds. I am still hoping and praying that it was the meds. and eventually it will all be flushed out of his body and we can go on with life! Things are going well, except for the jaundice.
Junior got off after about 9 hrs. instead of 10 today and I was able to go to town. I ran by a thrift store and met up with one of my friends, and all books were 4/$1. I bought several to sell. I didn't get any put on tonight. I vowed to go to bed earlier and it is now 10:25 and I am still up. I worked on altering a black & white composition book for someone to use as a journal. I hope to finish it tomorrow, only have one little thing left to do.
So I am off to bed so I can get up earlier in a.m. We need to clean house tomorrow. It doesn't even get dusted every week now, since Preston has been sick. Oh well, the dust will be here when we are dead and gone.
Monday, July 23, 2007
Monday
Well, today has been another busy day. Yesterday Preston had a visitor - one of our neighbors and he was so glad to see her. Anyhow, today speech came, and then the RN from Community Longterm Care and got all the paperwork out of the way. We can chose our own person to come in and take care of Preston and they will pay them, and the take home pay is $10.03/hr. So I already have someone in mind and have called her and she wants to do it. It is a good friend of ours whom Preston loves, so this will work out great. It may take 2 weeks or so to get Preston in the system. They are going to have a ramp built for us, help us buy diapers and wipes, and many services.
Preston has jaundice, he is yellow all over! So in a.m the home health nurse has to draw blood for a liver profile. I hope if he has to have IV's to flush the jaundice out, that it can all be done at home. That is one good thing about having home health! I have left off 2 doses of the meds. that is probably causing the jaundice, so hopefully his blood pressure will be ok. It was fine this a.m. when the speech therapist took it.
Missie is spending the night with a friend and going to NC to Ghost Town tomorrow and she is in 7th Heaven! She will be gone until late tomorrow night, but she is so excited about going. I will miss her as she is a big help to me.
Gotta finish supper dishes.
Preston has jaundice, he is yellow all over! So in a.m the home health nurse has to draw blood for a liver profile. I hope if he has to have IV's to flush the jaundice out, that it can all be done at home. That is one good thing about having home health! I have left off 2 doses of the meds. that is probably causing the jaundice, so hopefully his blood pressure will be ok. It was fine this a.m. when the speech therapist took it.
Missie is spending the night with a friend and going to NC to Ghost Town tomorrow and she is in 7th Heaven! She will be gone until late tomorrow night, but she is so excited about going. I will miss her as she is a big help to me.
Gotta finish supper dishes.
My mom
Well, my mom was a beautiful bride. My stepsister sent me pictures and they are sooo pretty, but I cannot figure out how to get them the right size, I was going to upload a picture of her and Jim, but it came out too small. She has always been a pretty woman, and I have as many gray hairs or more than she does and she is 75. The wrinkles around her eyes and nose and on her forehead are from squinting her eyes because she has poor eyesight, otherwise, I am not sure she would have any! Jim is a handsome man of 80, but very agile for his age. He gets around even better than mom, as she does have some arthritis. I am excited to go up and see them, maybe by the end of August!!
This is my mom's 3rd marriage. She never had a church wedding before and was able to have a small church wedding and from all reports and seeing what pictures I did, it was beautiful. I am so happy for her. She has been a widow for 20 years this last time. So it will be an adjustment for her, but the Lord sent her a wonderful husband. Pray for them as they start their life together!
This is my mom's 3rd marriage. She never had a church wedding before and was able to have a small church wedding and from all reports and seeing what pictures I did, it was beautiful. I am so happy for her. She has been a widow for 20 years this last time. So it will be an adjustment for her, but the Lord sent her a wonderful husband. Pray for them as they start their life together!
Sunday, July 22, 2007
Sunday
Well, today is Sunday. This a.m. Missie was awakened by Preston calling because he was wet. So Jr. and I got up and changed him, and he also needed his meds and to be fed. So I mixed up his meds, and Jr. fed him and I went back to bed, as well as Missie. Missie has had a cold all week and hasn't felt well. I am just sooo tired. So I went back to slept and slept until after 11. Felt so good to know Jr. was in control and I didn't have to worry about a thing. The down side of that is that none of us got to church. But the Lord knows all about it. It seems I finally have hit rock bottom from all that has happened. Soon I will feel like myself again. I cannot stay down for very long. It just isn't my personality.
Missie was to go on a camping trip for Mon. and Tues with friends and that was canceled and I was truly relieved. I felt like I needed her to help me here. I felt bad she didn't get to go, though, since she really wanted to.
Preston has jaundice and I did some research on internet and found out which medication is causing it, so have put a call through to the dr. on call. It is his high pressure medication that is causing it. It said to call immediately so I did that, and waiting to hear back. The pharmacy is open this afternoon and I was hoping they would call something else in. I don't want to take chances with his blood pressure.
So my life goes on. My abnormal life, but I should be used to that now. I just wish I was about 20 years younger. I could handle it better for sure.
Missie was to go on a camping trip for Mon. and Tues with friends and that was canceled and I was truly relieved. I felt like I needed her to help me here. I felt bad she didn't get to go, though, since she really wanted to.
Preston has jaundice and I did some research on internet and found out which medication is causing it, so have put a call through to the dr. on call. It is his high pressure medication that is causing it. It said to call immediately so I did that, and waiting to hear back. The pharmacy is open this afternoon and I was hoping they would call something else in. I don't want to take chances with his blood pressure.
So my life goes on. My abnormal life, but I should be used to that now. I just wish I was about 20 years younger. I could handle it better for sure.
Saturday, July 21, 2007
Saturday
I am glad it is Saturday. Jr. worked from 6-12 then has been home with us and that has been so nice. We just had a quiet afternoon. We got Preston up and I cut his hair and he was happy about that. He sat up for quite a while. His eyes have been just a sparkling today!
I have been feeling so tired, and then a headache, and not resting too well. I think maybe part of it is depression. I know I missed my meds. today, and have to be sure to take them tomorrow. I am very happy to be home, don't get me wrong, and very happy Preston is doing as well as he is, but I guess it all is catching up with me. I never talk to anyone or see anyone except the medical help that comes in, except maybe my mom, brother, my mother inlaw, on the phone. I guess I am kind of lonesome. We have no family, and not really any close friends. We just haven't had much opportunity to have friends with all that has happened in our lives since Preston has been born. I am so glad we have each other. Many times we say that is all we have, and God, too. I am not trying to put a guilt trip on anyone, but we have not had one visitor outside of medical people since Preston has been home in 3 weeks (will be on Monday.) I know people are busy and have their own lives. But I think it would help him a lot too to have company. I told Jr. I think that is why he is so happy to even have the nurse come by and take his blood pressure. Ok, so I am being a baby, but I guess I deserve to be after the past 12 weeks. I guess I am a little sad too because my mom got married today and I couldn't be there. She called me after her and Jim left the reception to go on their honeymoon. But Lord willing, Missie and I are going to fly up before winter for a few days to visit.
I hope tomorrow I will feel better. I will, if I take my meds. I try not to forget, or I start feeling down. Also, if I don't rest well, I don't feel well either. When Jr. got up this a.m. Preston was soaked. So he changed him, and then when I got up he was soaked again, and I had to strip the whole bed. It was a good hour before I got to eat breakfast, having to strip, bathe, give meds. and feed Preston. On Monday an organization called Community Long Term Care is coming and they will be helping with sending an aide etc. Missie and I will get to go places while she is here, if I can keep the car those days. They will also build us a ramp and help buy diapers.
Soon headed to bed.
I have been feeling so tired, and then a headache, and not resting too well. I think maybe part of it is depression. I know I missed my meds. today, and have to be sure to take them tomorrow. I am very happy to be home, don't get me wrong, and very happy Preston is doing as well as he is, but I guess it all is catching up with me. I never talk to anyone or see anyone except the medical help that comes in, except maybe my mom, brother, my mother inlaw, on the phone. I guess I am kind of lonesome. We have no family, and not really any close friends. We just haven't had much opportunity to have friends with all that has happened in our lives since Preston has been born. I am so glad we have each other. Many times we say that is all we have, and God, too. I am not trying to put a guilt trip on anyone, but we have not had one visitor outside of medical people since Preston has been home in 3 weeks (will be on Monday.) I know people are busy and have their own lives. But I think it would help him a lot too to have company. I told Jr. I think that is why he is so happy to even have the nurse come by and take his blood pressure. Ok, so I am being a baby, but I guess I deserve to be after the past 12 weeks. I guess I am a little sad too because my mom got married today and I couldn't be there. She called me after her and Jim left the reception to go on their honeymoon. But Lord willing, Missie and I are going to fly up before winter for a few days to visit.
I hope tomorrow I will feel better. I will, if I take my meds. I try not to forget, or I start feeling down. Also, if I don't rest well, I don't feel well either. When Jr. got up this a.m. Preston was soaked. So he changed him, and then when I got up he was soaked again, and I had to strip the whole bed. It was a good hour before I got to eat breakfast, having to strip, bathe, give meds. and feed Preston. On Monday an organization called Community Long Term Care is coming and they will be helping with sending an aide etc. Missie and I will get to go places while she is here, if I can keep the car those days. They will also build us a ramp and help buy diapers.
Soon headed to bed.
Thursday, July 19, 2007
Thurs. update
Well, today has been another busy day.
Ambulance from Med-Shore came this a.m. and got Preston and I for his dr.'s appt. The dr. told Preston he looked so much better than the last time he saw him, and Preston was talking to him and Dr. Johnson said that he could see he was getting his sense of humor back and he was glad to see that! We got all of the prescriptions figured out, there were 7 of them! We don't go back for 2 months. The speech therapist wanted Preston to have a barium swallow test done and a vision evaluation but the dr. and I agreed we feel it is too soon. The nurse said his vision will be the last thing to recover. I feel he will eat when he is ready. He is not taking all of his feedings these days; he just feels too full. Could be the heat, too. Because even with our central air running constantly, it gets up to 76 and 77 in here.
We were only home a short time when 2 therapists came driving in. OT and PT came together and got Preston up and walked him and had him sitting, and then put him in the computer chair and Preston can roll around the kitchen floor that way. He was tired, though, and just wanted to go back to bed. So he rested after they left, then I put a book on cd on for him and listened to that. Finally he asked me what time it was. I told him it about 4 and he ASKED TO GET UP!!!! He knows his daddy gets off at 4:30 and wanted to be up when he got home. Missie and I got him up, and did ok today with that! Missie and I were both so thrilled that he asked to get up.
I said "Wonderful wonderful" about something he said, and he started to sing, "Wonderful, wonderful, Jesus is to me, and we sang the chorus together. I asked him what his favorite song was and he said "Amazing Grace" and "I'm Not Sorry (that is a chorus we used to sing when we went to another church) and I told him his 1st service back to church I would ask Bro. Troy if we could sing "Amazing Grace." He will be so happy to get back to church.
So today has been a good day all in all.
Ambulance from Med-Shore came this a.m. and got Preston and I for his dr.'s appt. The dr. told Preston he looked so much better than the last time he saw him, and Preston was talking to him and Dr. Johnson said that he could see he was getting his sense of humor back and he was glad to see that! We got all of the prescriptions figured out, there were 7 of them! We don't go back for 2 months. The speech therapist wanted Preston to have a barium swallow test done and a vision evaluation but the dr. and I agreed we feel it is too soon. The nurse said his vision will be the last thing to recover. I feel he will eat when he is ready. He is not taking all of his feedings these days; he just feels too full. Could be the heat, too. Because even with our central air running constantly, it gets up to 76 and 77 in here.
We were only home a short time when 2 therapists came driving in. OT and PT came together and got Preston up and walked him and had him sitting, and then put him in the computer chair and Preston can roll around the kitchen floor that way. He was tired, though, and just wanted to go back to bed. So he rested after they left, then I put a book on cd on for him and listened to that. Finally he asked me what time it was. I told him it about 4 and he ASKED TO GET UP!!!! He knows his daddy gets off at 4:30 and wanted to be up when he got home. Missie and I got him up, and did ok today with that! Missie and I were both so thrilled that he asked to get up.
I said "Wonderful wonderful" about something he said, and he started to sing, "Wonderful, wonderful, Jesus is to me, and we sang the chorus together. I asked him what his favorite song was and he said "Amazing Grace" and "I'm Not Sorry (that is a chorus we used to sing when we went to another church) and I told him his 1st service back to church I would ask Bro. Troy if we could sing "Amazing Grace." He will be so happy to get back to church.
So today has been a good day all in all.
Wednesday, July 18, 2007
The day we took a tumble!
Well, it has been quite a day! Actually it has been a busy week. I get tired of people coming and going sometimes but I know I need the help and so does Preston. Anyhow, Monday was a quiet day. Tues. we had the home health nurse, OT, PT, so it was a full day. Today was speech, Equipped for life came and got the hoyer lift as I never used it and it was in the way. Then Carolina Homecare brought a bedside commode. AND Preston, myself and his swivel rocker took a tumble today. Whew! It scared me to death. I got Preston up alone, as I have done before, and he had walked over to the chair but he tends to sit down too soon and he did this and over went the chair, him and I and I could see his head headed for the bar counter top and I just knew it would split his head wide open. Well, apparently he didn't hit it that hard because his head was not bleeding nor was there a bump on the back of his head. I hit the wooden toy box with my arm and leg and there we were on the floor. Preston was kind of flabbergasted. Missie was outside on the trampoline which is several feet from the house, and I screamed while still on the floor, for her. She heard me and came in and helped me get him up and into the chair. If she wouldn't have been here, I probably would have had to call 911. So I have promised Missie not to get him up without her being close to help me. After it was over he thought it quite amusing and exciting and had to tell his daddy all about our "adventure" as he called it, when Junior got home from work. I am just thankful he wasn't hurt.
We are having problems with Preston's feedings. He is filling up and I am not getting to feed him every 4 hrs. and his stomach hurts. Not sure what is up with this. I am glad we are going to the dr. in a.m. Med Shore Ambulance Service will come and transport us to the neurosurgeon. He really enjoys riding in the back of that ambulance! I have to ride up front, but he is fine with that. The worse part is getting him to the ambulance, because we don't have a ramp.
BUT today I got a call from Community Long Term Care and they are coming Monday to do the interview. They first told me it would be 4-6 months. She told me today from what she has heard it won't be hard for him to qualify. They will build us a ramp and also help buy diapers. Thank the Lord for that. Have you priced adult diapers lately? $13 something for 16 diapers at Walmart. Thankfully, Junior's aunt and uncle in Greer went to Sam's and bought us 2 big cases of them, but he goes through them quite quickly! He is not ready to use the urinal or bedside commode yet. Also, community long term will also send an aide to help bathe him etc., and help with housework, and she will stay with Preston if Missie and I want to go somewhere. So that will be nice to have. It means more people in and out, and I might not want her every day, but once in a while will be nice.
Tomorrow afternoon, the OT and PT are both supposed to come together, OT being a man, PT being a woman, and get Preston up in the kitchen and try to get him to walk using the countertop. So tomorrow will be a busy day.
So that is the latest. If you find your life dull and boring, hop on over to 110 Woodworkers Lane and you will be glad to go back to your dull and boring life quite quickly I presume.
We are having problems with Preston's feedings. He is filling up and I am not getting to feed him every 4 hrs. and his stomach hurts. Not sure what is up with this. I am glad we are going to the dr. in a.m. Med Shore Ambulance Service will come and transport us to the neurosurgeon. He really enjoys riding in the back of that ambulance! I have to ride up front, but he is fine with that. The worse part is getting him to the ambulance, because we don't have a ramp.
BUT today I got a call from Community Long Term Care and they are coming Monday to do the interview. They first told me it would be 4-6 months. She told me today from what she has heard it won't be hard for him to qualify. They will build us a ramp and also help buy diapers. Thank the Lord for that. Have you priced adult diapers lately? $13 something for 16 diapers at Walmart. Thankfully, Junior's aunt and uncle in Greer went to Sam's and bought us 2 big cases of them, but he goes through them quite quickly! He is not ready to use the urinal or bedside commode yet. Also, community long term will also send an aide to help bathe him etc., and help with housework, and she will stay with Preston if Missie and I want to go somewhere. So that will be nice to have. It means more people in and out, and I might not want her every day, but once in a while will be nice.
Tomorrow afternoon, the OT and PT are both supposed to come together, OT being a man, PT being a woman, and get Preston up in the kitchen and try to get him to walk using the countertop. So tomorrow will be a busy day.
So that is the latest. If you find your life dull and boring, hop on over to 110 Woodworkers Lane and you will be glad to go back to your dull and boring life quite quickly I presume.
Monday, July 16, 2007
Monday
Well, I got my days mixed up and thought speech was coming today so I got most everything done by 11 and she didn't come. Maybe it is tomorrow? It is hard for me to keep up with them all. PT is supposed to come tomorrow afternoon. Thurs. a.m. I have scheduled a ride with Med Shore Ambulance Service to transport Preston to the neurosurgeon. I will ride also. I think Dr. Johnson will be quite pleased with how he is doing. He tried to eat a little this evening, but couldn't. I guess his brain is just not ready yet. He wants too, though, he asked what we were having for supper. I grilled squash and eggplant and he thought that sounded so good.
Preston certainly hasn't had any trouble urinating today! He has run us wild trying to keep him changed. I told him tomorrow we will try the urinal. I told him I will quit putting a diaper on him, so he will tell me when he has to go. I am having to potty train him all over again, and I am so tired! But I love him to death and will do my best for him, while encouraging him to do his best too. When he was a baby he wanted to be changed immediately when he wet and he is still the same way.
I had to go to the hospital to get meds. for Preston. They owed me some and I had to go there and get it, this evening, and stopped by the grocery store. It got me out of the house for a little while. But usually by evening, I am too tired to go anywhere.
Going to get to bed early tonight. I have one more feeding to give Preston and get my shower.
Preston certainly hasn't had any trouble urinating today! He has run us wild trying to keep him changed. I told him tomorrow we will try the urinal. I told him I will quit putting a diaper on him, so he will tell me when he has to go. I am having to potty train him all over again, and I am so tired! But I love him to death and will do my best for him, while encouraging him to do his best too. When he was a baby he wanted to be changed immediately when he wet and he is still the same way.
I had to go to the hospital to get meds. for Preston. They owed me some and I had to go there and get it, this evening, and stopped by the grocery store. It got me out of the house for a little while. But usually by evening, I am too tired to go anywhere.
Going to get to bed early tonight. I have one more feeding to give Preston and get my shower.
Saturday, July 14, 2007
Saturday!
Well, it has been a busy day.
Junior went this a.m. and got a part for our mower and got all of the mowing done, thank the Lord. I HATE long grass and weeds. We have a lot of weedeating to do after the mowing gets done. He got a lot of it done, but not quite all, and made 2 trips to the dump with garbage.
I left at 12:30 to meet Aunt Beulah at Miracle Mart on Wade Hampton and we looked around there and she gave me the 2 huge boxes of adult diapers they had bought for us. Then she took me out for lunch to a new buffet on Wade Hampton, it was very good! She also sent home corn on the cob, eggplant, squash, cucumbers, and some fruit. Then I stopped at another thrift store and ran into an old friend from Taylors who is moving to AZ at the end of the month, so I was very glad we got to see each other. Then I came home and unloaded everything and left again to pick up Missie. So I got Missie and went back into Greenville. I went into the hospital to the pharmacy to get some meds. they owed me and of course it was closed. Then we went to the library to meet another of Missie's friend so she could come home and spend the night and go to church with us in a.m. We went in and got some dvds and stories on cd and tape for Preston. Now I am home, thank goodness.
Preston wants to go to church. It won't be long until we can take him in his wheelchair, I don't think. I got Preston up twice today by myself because he stood straight up on his legs for me and took steps! He is getting stronger every day. He keeps talking about food, so I don't think it will be long until he is eating again. We will know when he is ready!
So it has been a productive and busy day.
Junior went this a.m. and got a part for our mower and got all of the mowing done, thank the Lord. I HATE long grass and weeds. We have a lot of weedeating to do after the mowing gets done. He got a lot of it done, but not quite all, and made 2 trips to the dump with garbage.
I left at 12:30 to meet Aunt Beulah at Miracle Mart on Wade Hampton and we looked around there and she gave me the 2 huge boxes of adult diapers they had bought for us. Then she took me out for lunch to a new buffet on Wade Hampton, it was very good! She also sent home corn on the cob, eggplant, squash, cucumbers, and some fruit. Then I stopped at another thrift store and ran into an old friend from Taylors who is moving to AZ at the end of the month, so I was very glad we got to see each other. Then I came home and unloaded everything and left again to pick up Missie. So I got Missie and went back into Greenville. I went into the hospital to the pharmacy to get some meds. they owed me and of course it was closed. Then we went to the library to meet another of Missie's friend so she could come home and spend the night and go to church with us in a.m. We went in and got some dvds and stories on cd and tape for Preston. Now I am home, thank goodness.
Preston wants to go to church. It won't be long until we can take him in his wheelchair, I don't think. I got Preston up twice today by myself because he stood straight up on his legs for me and took steps! He is getting stronger every day. He keeps talking about food, so I don't think it will be long until he is eating again. We will know when he is ready!
So it has been a productive and busy day.
Friday, July 13, 2007
Missie
I wanted to update you on Missie's life.
She had a sleepover with 2 friends earlier in the week, and is with another friend tonight and most of tomorrow. Then tomorrow night she is having a friend here and she will go to church with Missie on Sun a.m. Her name is Melissa too, and she goes by Missa.
Missie is our social butterfly. But she is also a huge help to me. She has decided she wants to be a nurse when she grows up. She knows how to tube feed Preston and does it sometimes when I have other things to do. She is a blessing.
She and Preston are so close right now. Seeing him suffer like she did, and almost losing him, has made him more special to her.
Life is so fragile, handle with care.
She had a sleepover with 2 friends earlier in the week, and is with another friend tonight and most of tomorrow. Then tomorrow night she is having a friend here and she will go to church with Missie on Sun a.m. Her name is Melissa too, and she goes by Missa.
Missie is our social butterfly. But she is also a huge help to me. She has decided she wants to be a nurse when she grows up. She knows how to tube feed Preston and does it sometimes when I have other things to do. She is a blessing.
She and Preston are so close right now. Seeing him suffer like she did, and almost losing him, has made him more special to her.
Life is so fragile, handle with care.
Good week
Well, the week started off hard with Preston being unable to urinate. But the nurse came on Wed. a.m. and walked me through doing an in and out cath. and I did that and we got 600 cc's out of his bladder. From then on he was able to go. From the color of his urine she said he wasn't getting enough liquids, so we have upped his liquids. On Wed. evening, he decided he was going to talk again, and started to talk. It as sooo amazing to hear him talk again. His speech is not as good as before, but it will improve as time goes on. Speech therapy went sooo well today. Thurs. a.m. when the physical therapist and speech therapists came, and he was talking, they were sooo thrilled and surprised! He surprised his nana in Canada and also his grandparents in NC. They were so thrilled and amazed when he talked to them on the phone.
We are working on his using the urinal now, but he hasn't been able to relax enough to do that but we will keep working on it. Adult diapers are very expensive. Jr.'s aunt and uncle went to Sam's and bought him 2 cases, Praise the Lord! That is almost 100 diapers! So that will help so much.
Preston has been listening to a lot of books on tape and cd's, and Adventures in Odyssey. He cannot see real well; sometimes better than others, so I hope that will improve as time goes on. He is afraid to eat, in case the food will get stuck. He told the speech therapist that today. She wanted him to go to the hospital and eat a cookie and let them exray him while he ate, and drink liquids etc., but he said no. He is just not ready to eat and drink by mouth yet, but it will come when he is ready.
We go to the neurosurgeon this week. We will be transported by ambulance. One thing I like about this is, that we don't have to wait in the waiting rooms when Preston is on a stretcher, so we get in and out quicker!
So we are encouraging and very very happy to still have our son. God has given us 2 beautiful children, and we treasure them.
We are working on his using the urinal now, but he hasn't been able to relax enough to do that but we will keep working on it. Adult diapers are very expensive. Jr.'s aunt and uncle went to Sam's and bought him 2 cases, Praise the Lord! That is almost 100 diapers! So that will help so much.
Preston has been listening to a lot of books on tape and cd's, and Adventures in Odyssey. He cannot see real well; sometimes better than others, so I hope that will improve as time goes on. He is afraid to eat, in case the food will get stuck. He told the speech therapist that today. She wanted him to go to the hospital and eat a cookie and let them exray him while he ate, and drink liquids etc., but he said no. He is just not ready to eat and drink by mouth yet, but it will come when he is ready.
We go to the neurosurgeon this week. We will be transported by ambulance. One thing I like about this is, that we don't have to wait in the waiting rooms when Preston is on a stretcher, so we get in and out quicker!
So we are encouraging and very very happy to still have our son. God has given us 2 beautiful children, and we treasure them.
Tuesday, July 10, 2007
Tues update
Well, today Preston has had problems urinating again. Tonight it took 3 hrs. for him to go. I put his hand in warm water, put a warm rag on him, to try and help him go. Finally he went and it is after 11 p.m. I have to talk to someone tomorrow about this problem as he may have a urinary tract infection.
The physical therapist said his good leg was much stronger today, and she is very pleased with his progress. We sat him on the side of the bed, and he wasn't too happy and he stuck out his tongue at her. We were surprised because he hasn't been able to do that he had the bad infection. He has learned this week to shake his head yes and no, and to wave bye, and blow kisses. He is scared to get up. Jr. and I got him up and sat him in his swivel rocker and he tried desperately to get up so he could go back to bed. After asking Preston questions and by his answering with head nods, Junior found out he wants to walk, etc. but at this time is scared. I can understand that as he has been in bed a long time.
Tomorrow speech therapist comes and I don't know who else. They are a help to me.
Please pray for Preston's problem with urinating. He doesn't need another infection right now. Pray this will improve. I have been giving him cranberry juice to see if that would help.
The physical therapist said his good leg was much stronger today, and she is very pleased with his progress. We sat him on the side of the bed, and he wasn't too happy and he stuck out his tongue at her. We were surprised because he hasn't been able to do that he had the bad infection. He has learned this week to shake his head yes and no, and to wave bye, and blow kisses. He is scared to get up. Jr. and I got him up and sat him in his swivel rocker and he tried desperately to get up so he could go back to bed. After asking Preston questions and by his answering with head nods, Junior found out he wants to walk, etc. but at this time is scared. I can understand that as he has been in bed a long time.
Tomorrow speech therapist comes and I don't know who else. They are a help to me.
Please pray for Preston's problem with urinating. He doesn't need another infection right now. Pray this will improve. I have been giving him cranberry juice to see if that would help.
Monday, July 9, 2007
Ok, it let me type a title! Wild Day!
I am sooooo tired. It has been quite a day. Preston had an appt. in Greenville today about his g-tube so we had to be transported by ambulance. Well, we got that over with, and a few hours later he was fussing and hurting and we found out he needed to urinate and couldn't. He had not had a wet diaper all day. Well, I despise the fact you cannot get through to a nurse at the dr.'s office without first going through all the options and then having to leave a message. Home health could not catherize him because they didn't have an order to do so. So I called the ambulance and they came once again (a different one) and took us to ER at Greenville Memorial. He was hurting because his bladder was so full. Well, the nurse came in there to take his blood pressure and all of a sudden he started to laugh out loud. I was shocked, because he had been in such agony. I asked what he was laughing about and looked and lo and behold he had wet his diaper and the bed. He really did need to go and wet everything. So the ambulance was still there and I asked if they would take us home and he said we would probably have to pay out of pocket because med-shore ambulance service actually has Preston's contract with medicaid. So we called them and they said it would take a while but they would come and take us home. Missie and I came on home, and just before the ambulance got here with Preston and Jr., it started storming. It was raining in torrents but let up enough that they were able to cover Preston up and get him in the house. Oh, in between these 2 ambulance rides, we had a social worker come who is hooking up with community care and they will help with diapers and BUILD A RAMP!!!! We need one sooo bad. And the OT lady, Kelly came, to do therapy with Preston. At 9:15 in a.m. the PT lady, Claudia, comes. And I am not sure who else comes tomorrow. It is a busy life, and I am glad for the help, but it is hard to have people coming in and out every day. But it is better than being at the hospital for sure.
Oh, the home health nurse is getting an order to teach me how to do an in and out cath if I need to, on Preston. So that will help a lot. Not sure if he has spasms or what the problem is.
Well, it is time to feed Preston again and I am going to bed.
Oh, the home health nurse is getting an order to teach me how to do an in and out cath if I need to, on Preston. So that will help a lot. Not sure if he has spasms or what the problem is.
Well, it is time to feed Preston again and I am going to bed.
Friday, July 6, 2007
Just so you know, for some reason, it wouldn't let me type a title tonight so that is my blog entry is titleless, LOL.
I am glad it's Friday, except for the fact that Junior has to work in the a.m. and we have sooo much to do. Our grass is so long and the mower broke down. Junior has to get a part and fix it. We have trash from 10 weeks ago when we entered the hospital that needs to be hauled away. It is probably maggot infested. Junior took one load off when Preston was in the hospital. Am going to see if our neighbor could haul some in the back of his truck tomorrow for us. They have offered to help us several times. Hoping Jr. can use their lawnmower too. I imagine when he gets off work at noon tomorrow, most lawn mower shops might be closed.
Well, today we had the nurse visit and the physical therapist. The physical therapist was encouraged by how Preston is now wiping his nose, rubbing his eyes, etc. He moves his legs a lot too. I don't feel that all of a sudden Preston will start doing all the things he used to do. I feel it will be a gradual thing. I told Lisa (Graham) today that Preston breaks all of the medical rules, so he will not follow the norm for this type of thing. I went by Lisa's today and she lent me some more Adventures in Odyssey for Preston to listen too. He doesn't seem interested in watching dvds. He will listen to them, but won't hardly look at the screen. I am not really sure how well he can see at this point. So I have been letting him listen to books on cd and tapes, and he loves Adventures in Odyssey. I appreciate the Graham's lending us theirs. Anyhow, the therapist found out there was a load of wood from a ramp in Liberty that a lady is giving us to help us bruild a ramp and she is going to arrange for her husband and someone else to get this load of wood for us and bring it to our house. She lives quite close to us, and is such a sweet lady.
A lady in Easley gave me a bunch of disposable diapers and pads for the bed, for Preston. I was sooo appreciative of this. We had to buy a pkg. this week and they were $16. We would need 2/week. One of Preston's new meds. makes him urinate much more frequently then he used too. That would get very expensive. I was soooo appreciative of her giving them to me. Medicaid does pay for the feeding supplies, and I am so grateful for that. Not sure what the cans of formula would cost if we had to buy them. Also, because Preston turned 19, we have to pay $3 for each of his perscriptions whereas they were free in the past. But that is what his SSI is for, and we are thankful he gets that.
Thanks for caring and praying for us. Please continue to pray for us all.
I am glad it's Friday, except for the fact that Junior has to work in the a.m. and we have sooo much to do. Our grass is so long and the mower broke down. Junior has to get a part and fix it. We have trash from 10 weeks ago when we entered the hospital that needs to be hauled away. It is probably maggot infested. Junior took one load off when Preston was in the hospital. Am going to see if our neighbor could haul some in the back of his truck tomorrow for us. They have offered to help us several times. Hoping Jr. can use their lawnmower too. I imagine when he gets off work at noon tomorrow, most lawn mower shops might be closed.
Well, today we had the nurse visit and the physical therapist. The physical therapist was encouraged by how Preston is now wiping his nose, rubbing his eyes, etc. He moves his legs a lot too. I don't feel that all of a sudden Preston will start doing all the things he used to do. I feel it will be a gradual thing. I told Lisa (Graham) today that Preston breaks all of the medical rules, so he will not follow the norm for this type of thing. I went by Lisa's today and she lent me some more Adventures in Odyssey for Preston to listen too. He doesn't seem interested in watching dvds. He will listen to them, but won't hardly look at the screen. I am not really sure how well he can see at this point. So I have been letting him listen to books on cd and tapes, and he loves Adventures in Odyssey. I appreciate the Graham's lending us theirs. Anyhow, the therapist found out there was a load of wood from a ramp in Liberty that a lady is giving us to help us bruild a ramp and she is going to arrange for her husband and someone else to get this load of wood for us and bring it to our house. She lives quite close to us, and is such a sweet lady.
A lady in Easley gave me a bunch of disposable diapers and pads for the bed, for Preston. I was sooo appreciative of this. We had to buy a pkg. this week and they were $16. We would need 2/week. One of Preston's new meds. makes him urinate much more frequently then he used too. That would get very expensive. I was soooo appreciative of her giving them to me. Medicaid does pay for the feeding supplies, and I am so grateful for that. Not sure what the cans of formula would cost if we had to buy them. Also, because Preston turned 19, we have to pay $3 for each of his perscriptions whereas they were free in the past. But that is what his SSI is for, and we are thankful he gets that.
Thanks for caring and praying for us. Please continue to pray for us all.
Wednesday, July 4, 2007
Repeated myself
I realize now I repeated myself about EMS having problems getting him in the house when we arrived home. Just chalk it up to staying too long in the hospital. I am ever soooo glad to be home. 9 weeks in a hospital makes one appreciate home. Even taking a shower is a wonderful luxury.
I think I left this out in my last post. But Scott, the physical therapist said today he may have to go to rehab later, when his brain is ready to walk, talk, etc. But we will cross that bridge when we get to it. At least we have been able to be home in between. It was important to us all.
I think I left this out in my last post. But Scott, the physical therapist said today he may have to go to rehab later, when his brain is ready to walk, talk, etc. But we will cross that bridge when we get to it. At least we have been able to be home in between. It was important to us all.
Busy, busy, busy
It is a busy life since we got home. But we are sooo happy to be home.
It was quite a job for the EMS people to get Preston into our house with all of these steps. They had to call the "big man" and he was big! They put him in a wheelchair and tied him in and brought him up the steps backward. It was quite an ordeal. Monday they have to come and get him and I to take him to the surgeon's office.
Tues. we had a nurse for home health come and she got everything set up. Then today we had the speech therapist and PT come and did evaluations. The PT guy, Scott, said he is not ready neurologically to start walking, etc. But he said it can happen overnight, all of a sudden a light will come on and he will start doing the things he used too. But we have to continue to get him up, and help strengthen his muscles. We got him up twice yesterday and once today so far. He can stand on his legs and take steps, when he wants too. It is hard when he won't, he is dead weight. I haven't tried to get him up yet alone. Missie panics if I even think about it.
Preston is enjoying hearing books on tape. Then Missie lays beside him and reads to him.
We are doing well with tube feeding him. Jr. does his first feeding about 5 a.m. He is supposed to have 5 feedings/day. Missie knows how to do it too, and helps with that. I have to crush his pills and then some of his meds. are liquid and mix them all with water to put in the g-tube. Then keeping him dry and giving his bath everyday, etc., it takes time, but I want him comfortable and I will get on a routine soon. Junior is home today, so that has been nice.
A man on the other side of Greenville gave us a ramp. So Dwayne, my friend Joanne's husband and three of his sons and Jr. went and got it today. We have another load of wood from a ramp that has been torn down to get, so Junior can start working on a ramp. It is very much needed right now. We are not quite sure where we will put it yet.
So wanted to write an update and post some pictures.
It was quite a job for the EMS people to get Preston into our house with all of these steps. They had to call the "big man" and he was big! They put him in a wheelchair and tied him in and brought him up the steps backward. It was quite an ordeal. Monday they have to come and get him and I to take him to the surgeon's office.
Tues. we had a nurse for home health come and she got everything set up. Then today we had the speech therapist and PT come and did evaluations. The PT guy, Scott, said he is not ready neurologically to start walking, etc. But he said it can happen overnight, all of a sudden a light will come on and he will start doing the things he used too. But we have to continue to get him up, and help strengthen his muscles. We got him up twice yesterday and once today so far. He can stand on his legs and take steps, when he wants too. It is hard when he won't, he is dead weight. I haven't tried to get him up yet alone. Missie panics if I even think about it.
Preston is enjoying hearing books on tape. Then Missie lays beside him and reads to him.
We are doing well with tube feeding him. Jr. does his first feeding about 5 a.m. He is supposed to have 5 feedings/day. Missie knows how to do it too, and helps with that. I have to crush his pills and then some of his meds. are liquid and mix them all with water to put in the g-tube. Then keeping him dry and giving his bath everyday, etc., it takes time, but I want him comfortable and I will get on a routine soon. Junior is home today, so that has been nice.
A man on the other side of Greenville gave us a ramp. So Dwayne, my friend Joanne's husband and three of his sons and Jr. went and got it today. We have another load of wood from a ramp that has been torn down to get, so Junior can start working on a ramp. It is very much needed right now. We are not quite sure where we will put it yet.
So wanted to write an update and post some pictures.
Monday, July 2, 2007
We are home!
We all are home, yippee! and exhausted. It was 9 weeks to the day since Preston walked out this house. We are sad he could not walk back in. It was hard for the EMS people to get him up all of the steps and into the house. We have a 15 ft. ramp that has been given to us, and all of the wood from another ramp, but we have to find someone to haul this for us. We need one really bad. In 1 week I have to take him to the surgeon's office, and will have to get the ambulance to take him. It would be too hard to get him in and out of our car right now. He has been smiling a lot since he got home. I think he is very happy to be home.
Our house is crowded, but it is worth it. We have the hospital bed in the living room so Preston can be with us. Under his bed is boxes of his formula to feed him, syringes, etc. etc. The hospital was so good to us. They gave us diapers, pads, disposable chucks, mouthcare supplies, syringes etc. Everyone was so sweet and had gotten to know us. They wanted to say goodbye to us, and wish us well.
Home Health will be starting tomorrow. I am not sure when the therapists will start yet.
I will write more in the next couple of days. I want to shower and go to bed.
Keep praying for us, and for Preston's recovery.
Norma Gwen
Our house is crowded, but it is worth it. We have the hospital bed in the living room so Preston can be with us. Under his bed is boxes of his formula to feed him, syringes, etc. etc. The hospital was so good to us. They gave us diapers, pads, disposable chucks, mouthcare supplies, syringes etc. Everyone was so sweet and had gotten to know us. They wanted to say goodbye to us, and wish us well.
Home Health will be starting tomorrow. I am not sure when the therapists will start yet.
I will write more in the next couple of days. I want to shower and go to bed.
Keep praying for us, and for Preston's recovery.
Norma Gwen
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