Well, our baby is growing up.
Missie is 13 but quite mature for her age. We feel it is because of Preston's many problems and she is such a good help with him. Anyhow, I talked to her this a.m. She has been at youth camp and she said the Lord really moved. Praise the Lord she was able to attend. She needed that right now, more than anything else. But at the awards banquet a boy from PennView asked her to sit with him. She has thought this guy was cute and all, but was embarressed when he asked her because others were around. So she said yes and he even pulled out her chair for her, and I told her that was a true gentleman! I asked her now if she would like to move to PennView and she emphatically said, "Yes." We do not allow her at this age to be involved with boys, but this was a little different situation. I pictured he would have dark hair for some reason, but she said he had dirty blond hair. Anyhow, she was sooo elated. I reminded her of how to act like a lady, and she said she had been.
Today she leaves Knoxville and goes on down to where we pastored, or very close to there, and stay with her friend until next weekend. I am so glad the Lord worked it out for her to go, transportation wise. But we couldn't have done it with Preston in the hospital. My hubby is usually right (once in a while he is wrong, LOL) in that she needed to go, and he wanted her to go and made the decision. That is why God gave us good husbands to be the leaders of our homes and make final decisions. I want him to do this. Some women may not, but I do!!! He is very wise (not bragging, but when we pastored he was known for his wisdom) and not as emotional as I am, so it is much better for him to make these kinds of decisions. I thank the Lord for my good husband. We have been married almost 27 years and always stuck together through thick and thin, and continue to do so. Just had to share about our Missie.
Saturday, June 9, 2007
Friday, June 8, 2007
Friday update
Thank God it is Friday. That means I sleep at home tonight and get a good night's rest.
I didn't sleep much last night. Preston was gagging, and throwing up green stuff through his NG tube, and trembling so bad. Today I told the nurse and his daddy and I wanted the NG tube pulled out as it was not in use, and he already had a much smaller tube for feeding and meds. They kind of argued about it but I told them it was our decision. So they pulled it out but when they did, the one he needed came partially out too. So! He was still gagging and I was suctioning him out and saw the yellow tube across the back of his mouth. So I asked the nurse and she said it wasn't supposed to be there and it probably came out when she pulled the larger one out. Don't you think she should have checked to see if that happened??? We think she should have! Anyhow, I reached in there because she wasn't in a hurry to help me, and pulled it to the front of his mouth to keep him from gagging so bad. So we ended it up having it pulled out too. We are leaving it out until in the a.m. Jr. felt he had been through enough today. Jr. will have had it put back in before I get there tomorrow. I cannot take much more. My nerves are about shot and they are going to start a PIC line so he will have a more permanent IV and not have to get stuck so much, but it will be traumatic for him, as they don't want to fully sedate him because of his recent breathing problems. Junior just called me and they are doing it first thing in the a.m. They may have to go deep into his arm. Sometimes I feel so helpless. I don't know which way to turn. He has gradually gotten worse since he has been in there.
Yesterday he was awake more and even smiled and grunted at people when they talked to him. But he threw up a lot yesterday and then during night and this a.m., but none since the NG tube has been out. After they got it out he took a good long nap, I know he was worn out too.
Please keep praying. We need God's help like never before; Preston especially. He cannot tell me where he hurts, or what he wants, and that is so hard. I have to guess as to what is bothering him.
I don't understand everything that has happened. I think it is ok not to understand. It is not ok to let bitterness grow over it all. What few things Preston did enjoy in this life, he has been robbed of them all at this point. It will be a long road back for him; if the Lord spares his life. It is so heartbreaking to watch your child suffer and not be able to fix it and make it all better. Only God can give the strength we need to make it through this; and I only wish I had talked more thoroughly with Preston about something like this, than I did. But I am not sure how much he would have understood about it all. I only want him to be able to walk, talk, eat, etc. like he did before he went into the hospital.
Please continue to pray for us.
I didn't sleep much last night. Preston was gagging, and throwing up green stuff through his NG tube, and trembling so bad. Today I told the nurse and his daddy and I wanted the NG tube pulled out as it was not in use, and he already had a much smaller tube for feeding and meds. They kind of argued about it but I told them it was our decision. So they pulled it out but when they did, the one he needed came partially out too. So! He was still gagging and I was suctioning him out and saw the yellow tube across the back of his mouth. So I asked the nurse and she said it wasn't supposed to be there and it probably came out when she pulled the larger one out. Don't you think she should have checked to see if that happened??? We think she should have! Anyhow, I reached in there because she wasn't in a hurry to help me, and pulled it to the front of his mouth to keep him from gagging so bad. So we ended it up having it pulled out too. We are leaving it out until in the a.m. Jr. felt he had been through enough today. Jr. will have had it put back in before I get there tomorrow. I cannot take much more. My nerves are about shot and they are going to start a PIC line so he will have a more permanent IV and not have to get stuck so much, but it will be traumatic for him, as they don't want to fully sedate him because of his recent breathing problems. Junior just called me and they are doing it first thing in the a.m. They may have to go deep into his arm. Sometimes I feel so helpless. I don't know which way to turn. He has gradually gotten worse since he has been in there.
Yesterday he was awake more and even smiled and grunted at people when they talked to him. But he threw up a lot yesterday and then during night and this a.m., but none since the NG tube has been out. After they got it out he took a good long nap, I know he was worn out too.
Please keep praying. We need God's help like never before; Preston especially. He cannot tell me where he hurts, or what he wants, and that is so hard. I have to guess as to what is bothering him.
I don't understand everything that has happened. I think it is ok not to understand. It is not ok to let bitterness grow over it all. What few things Preston did enjoy in this life, he has been robbed of them all at this point. It will be a long road back for him; if the Lord spares his life. It is so heartbreaking to watch your child suffer and not be able to fix it and make it all better. Only God can give the strength we need to make it through this; and I only wish I had talked more thoroughly with Preston about something like this, than I did. But I am not sure how much he would have understood about it all. I only want him to be able to walk, talk, eat, etc. like he did before he went into the hospital.
Please continue to pray for us.
Wednesday, June 6, 2007
Wed. update
Well, today was not a good day. Preston was awake more, BUT the dumb doctor whom we are not real fond of anyhow (one of the floor doctors for PICU)made a huge mistake today. He told the nurse to pull out Preston's NG tube and put a real tiny one in down to his small intestine so he could be fed. Well, she pulls it out, and it takes 3 times of trying to get the little one down, and he was almost in respiratory distress by the time they were done, and then listen to this! The dr. walks in Preston's door and says that he needs the bigger NG tube that they had just pulled out. I was in tears and very upset. I told them they had to let him calm down and rest. So he wasn't able to go on the B-pap machine right away, just stay on oxygen. I asked him why he did it, and he said, "I take full responsibility for everything that happens on the unit." Then he had the nerve to say, "This is the most I have seen him awake, do you agree?" I said, "So you torture him so he will wake up?" He said that maybe he should ask me that question at another time. I called Jr. at work in the middle of this, and he when I told him what dr. had done and that they had to put another one in, he said, "What??? Do I need to come to the hospital, and I said yes. So he came. So he told the nurse he wanted to see the dr. and when the dr. came in he started toward me saying he was sorry and Jr. told him HE was the one he was going to talk too and he said ok. He told him it was miscommunication. He had told the nurse the tube was too high, whereas she told me the dr. told her to take it out. So someone is not telling the truth. Everyone apologized but that doesn't change the fact of what happened. But they got the 2nd one in pretty easy, Jr. said. When Jr. got there and they were ready to do it, he told me to go somewhere for a while, and he stayed for it. I went to Easley and ran some errands.
After the trauma was over, Preston rested quite well. He was so hot and sweaty from it all, and I got him cooled down, and he went to sleep. He is having some tremors but not as bad as they were. Thank the Lord for that. He did have a lot this a.m. early and I asked them to give him ativan. That usually helps some. Ativan helps the nervous system as well as helps control seizures.
Overall, I think Preston is a tiny bit better. The chest exrays are looking a little better. We are a little more positive than we were on Monday. I was told my one of the nurses that this dr. from today is the most negative of all of the doctors that rotate on the unit. He is afraid to give hope and then have the patient die. But I think he is a little too cautious, maybe.
I am home to sleep tonight, I am exhausted. I will go back in a.m. and Jr. will go to work.
Keep praying for us all. Thank you for the cards, visits and we appreciate our church family so much. Our church has given us money to help us pay our bills during this time. It has been such a blessing. Our pastor, Bro. Going, hardly misses a day of coming to see us and pray with us. Many visit over and over again and when they cannot come, they call to check on Preston. We are so blessed.
After the trauma was over, Preston rested quite well. He was so hot and sweaty from it all, and I got him cooled down, and he went to sleep. He is having some tremors but not as bad as they were. Thank the Lord for that. He did have a lot this a.m. early and I asked them to give him ativan. That usually helps some. Ativan helps the nervous system as well as helps control seizures.
Overall, I think Preston is a tiny bit better. The chest exrays are looking a little better. We are a little more positive than we were on Monday. I was told my one of the nurses that this dr. from today is the most negative of all of the doctors that rotate on the unit. He is afraid to give hope and then have the patient die. But I think he is a little too cautious, maybe.
I am home to sleep tonight, I am exhausted. I will go back in a.m. and Jr. will go to work.
Keep praying for us all. Thank you for the cards, visits and we appreciate our church family so much. Our church has given us money to help us pay our bills during this time. It has been such a blessing. Our pastor, Bro. Going, hardly misses a day of coming to see us and pray with us. Many visit over and over again and when they cannot come, they call to check on Preston. We are so blessed.
Monday, June 4, 2007
Monday update
I wish I had a good update, but I don't.
Today has been a bad day. When the heavy meds. from Sat. p.m. wore off, Preston started to have almost constant shaking especially in his legs. I tried to comfort him for hours and finally asked about some meds. to help calm that. So then the dr. had a talk with Junior and I about the pros and cons of his condition. It does not look good at all. I told Preston this a.m. that I would be ok if he had to go to Heaven to be with Jesus. I wanted him to know it was ok if he had to quit fighting and go home to be with Jesus.
He has a pnemonia or deflation of his left lung. His breathing was awful, and they put him on a bi-pap machine again to help with his breathing. It has relieved him. Jr. and I have decided to not put him on the respirator if the bi-pap fails to help him any longer. We will let them administer meds. to keep him as comfortable as possible. Today was the day that Junior really had to cry it all out.
The dr.s do not feel he is feeling any discomfort when he has this shaking. We don't know, of course. He does open his eyes when people talk to him and grunts like he might want to talk back. He especially did this when Bro. and Sis. Parker came in this evening. I believe he heard them but couldn't respond.
So please continue to pray that Preston will not have to lay for days and continue to suffer. That is our prayer. God knows if he will ever get well or not, and if it time for him to go, then we have to let him go.
Today has been a bad day. When the heavy meds. from Sat. p.m. wore off, Preston started to have almost constant shaking especially in his legs. I tried to comfort him for hours and finally asked about some meds. to help calm that. So then the dr. had a talk with Junior and I about the pros and cons of his condition. It does not look good at all. I told Preston this a.m. that I would be ok if he had to go to Heaven to be with Jesus. I wanted him to know it was ok if he had to quit fighting and go home to be with Jesus.
He has a pnemonia or deflation of his left lung. His breathing was awful, and they put him on a bi-pap machine again to help with his breathing. It has relieved him. Jr. and I have decided to not put him on the respirator if the bi-pap fails to help him any longer. We will let them administer meds. to keep him as comfortable as possible. Today was the day that Junior really had to cry it all out.
The dr.s do not feel he is feeling any discomfort when he has this shaking. We don't know, of course. He does open his eyes when people talk to him and grunts like he might want to talk back. He especially did this when Bro. and Sis. Parker came in this evening. I believe he heard them but couldn't respond.
So please continue to pray that Preston will not have to lay for days and continue to suffer. That is our prayer. God knows if he will ever get well or not, and if it time for him to go, then we have to let him go.
Sunday, June 3, 2007
Sunday update
I probably won't get to do many updates this week. I hate to go out of the room when Jr. is not there, because of Preston's shaking attacks, because it seems if Jr. or I rub his face and speak to him, he calms down quite quickly.
Preston has slept most of the day. He is on an oxygen mask where oxygen is mixing with air at 40% to keep his heart from racing like it did last night. He has an NG tube where they put his medication for seizures. He has opened up his eyes a few times, but won't squeeze our hands or anything like that. But the nurse said when they shine the light in his eyes they are reacting normally. They haven't given him any ativan today and are wanting him to wake him and see what happens. Maybe tomorrow he will more awake. They are giving him 2 kinds of seizures medications to try and control the seizures.
They are hoping to get an internal shunt put in by the end of this week. If they can do that and it will work, that will be one less problem they have to deal with. Then they can work on these other problems that Preston has.
Missie has called 4 times today. She is so torn, but we think youth camp is exactly what she needs right now, even though I miss her so much. I hate being there without her or Jr. as I cannot leave the room for very long at all without worrying he will have a shaking attack, and wanting to be there to calm him if at all possible.
We had lots of company today, and it helped so much. A lady from church even brought us food. We ended up getting free trays from the nurse for dinner and supper as well as the food Dawn brought So we have been blessed today. A Christian sister of mine brought her guitar and we sang some of Preston's favorite hymns. That helped since we haven't been able to get to church much lately.
Thanks for praying, and caring. Please continue to remember us in prayer. I have more at peace today and was able to care for Preston as needed without being so emotional. God is truly our strength right now.
Preston has slept most of the day. He is on an oxygen mask where oxygen is mixing with air at 40% to keep his heart from racing like it did last night. He has an NG tube where they put his medication for seizures. He has opened up his eyes a few times, but won't squeeze our hands or anything like that. But the nurse said when they shine the light in his eyes they are reacting normally. They haven't given him any ativan today and are wanting him to wake him and see what happens. Maybe tomorrow he will more awake. They are giving him 2 kinds of seizures medications to try and control the seizures.
They are hoping to get an internal shunt put in by the end of this week. If they can do that and it will work, that will be one less problem they have to deal with. Then they can work on these other problems that Preston has.
Missie has called 4 times today. She is so torn, but we think youth camp is exactly what she needs right now, even though I miss her so much. I hate being there without her or Jr. as I cannot leave the room for very long at all without worrying he will have a shaking attack, and wanting to be there to calm him if at all possible.
We had lots of company today, and it helped so much. A lady from church even brought us food. We ended up getting free trays from the nurse for dinner and supper as well as the food Dawn brought So we have been blessed today. A Christian sister of mine brought her guitar and we sang some of Preston's favorite hymns. That helped since we haven't been able to get to church much lately.
Thanks for praying, and caring. Please continue to remember us in prayer. I have more at peace today and was able to care for Preston as needed without being so emotional. God is truly our strength right now.
Saturday, June 2, 2007
Latest on Preston - Sat. night
Preston is back and settled in PICU. He has a NG tube for feeding and giving his meds. crushed up, and a cathedar as he hasn't been able to urinate on his own. He is on ativan and dylantin for seizures and the depakote he was already on. The CT scan showed fluid on the brain even after the surgery today, and the neurosurgeon lowered the drain to get it flowing better. So I guess right now he is considered in stable condition.
Saturday update
I have cried so much the past 2 days. I feel I cannot go on watching Preston suffer. He is being moved back in PICU tonight. They feel the episodes of his whole body trembling, moaning, writhing etc., are seizures. His heart rate went up to 184 this afternooon while having one and he was almost in respiratory distress and his O2 sats were down in the 70's with oxygen on. I felt all along he was having seizures, but what does mama know??? So right now they are giving him ativan which helps with nerves and seizures. The PICU drs. are trying to figure out what to do for the seizures, and want to be able to watch him more closely. My heart is so broken over all he has suffered. He had another external shunt put in this a.m. because his other one fell out. It had partially come out and the dr. put it back in without sedating him and it must have been so painful because he had a seizure. It started to work, then by 6:30 a.m. it was only hanging in his head barely and he had to have surgery. But they did not fully put him to sleep. They didn't want to have to put him on the respirator again, and the hole for the external shunt to go into was already there. They sedated him, but I don't know how much pain he actually felt. Where will this all end? I am asking God again to please take him to Heaven. No mother wants to lose her only son and oldest child, or any child for that matter, but no mother wants to watch him suffer day after day and he is worse off by far than when he went in there.
Missie left today and is in NC with friends and they are leaving Monday for Knoxville youth camp. I really didn't want her to leave right now, but Junior felt it would be the best thing for her. If she has to come early, they will bring her back.
I am home and Jr. wants me to try and get a good night's rest. I am so exhausted. I don't know if I will sleep much or not, but I will try and go back over in a.m. I am not sure if I have shared this or not, but Jr. and I have decided and it is in Preston's chart, that he is not full code any longer. If his heart stops they will not shock him or use the paddles. If his heart is ok and he just needs help breathing, he can be put on the respirator. But if things do not improve we can always take him back off. We feel we must do this. Preston and I have talked about it and he never wanted to be on kidney dialysis or on life support. We don't want to prolong his agony.
Thanks for all your prayers, please continue to pray for us.
Missie left today and is in NC with friends and they are leaving Monday for Knoxville youth camp. I really didn't want her to leave right now, but Junior felt it would be the best thing for her. If she has to come early, they will bring her back.
I am home and Jr. wants me to try and get a good night's rest. I am so exhausted. I don't know if I will sleep much or not, but I will try and go back over in a.m. I am not sure if I have shared this or not, but Jr. and I have decided and it is in Preston's chart, that he is not full code any longer. If his heart stops they will not shock him or use the paddles. If his heart is ok and he just needs help breathing, he can be put on the respirator. But if things do not improve we can always take him back off. We feel we must do this. Preston and I have talked about it and he never wanted to be on kidney dialysis or on life support. We don't want to prolong his agony.
Thanks for all your prayers, please continue to pray for us.
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