My sis and her grandbaby, Elizabeth, she is a doll!

My sis and her grandbaby, Elizabeth, she is a doll!

My nephew Will, his wife Nicole and the newest family member, my great niece Elizabeth

My nephew Will, his wife Nicole and the newest family member, my great niece Elizabeth

Mom, me, Barb and Myles (my sis and bro)

Mom, me, Barb and Myles (my sis and bro)

Missie and Uncle Myles (my brother)

Missie and Uncle Myles (my brother)

Missie and grandparents

Missie and grandparents

Missie at park in Brockville,Ont. Canada

Missie at park in Brockville,Ont. Canada

Missie and I went to Canada in October

Missie and I went to Canada in October
Mom and Jim

Part of Preston's room, he has large room, calls it his apt.

Part of Preston's room, he has large room, calls it his apt.
has a recliner and little refrig.

Missie wanted her room lime green and black

Missie wanted her room lime green and black
turned out very nice!

Left side of kitchen

Left side of kitchen

Right side of kitchen (sunflowers)

Right side of kitchen (sunflowers)

Other half of living room

Other half of living room

Part of living room

Part of living room

Part of our dining room, it is a large room

Part of our dining room, it is a large room

Our new home!

Our new home!

Jr.s shop

Jr.s shop

2 car garage

2 car garage

This is the only way it would let me post :(

Here it is December, where has time gone. I just realized this a.m. I have not posted pics of our new home, where we moved to in May. I am really bad at blogging now :( Preston is doing great! He did have a cold, but other than that, he is doing well! We are so thankful for that.Missie loves Union Bible Academy. She has moved into the dorm so she won't have to drive 1 1/2 hrs/day and during winter it would have been hard. She loves living in dorm and having her friends there. She is in choir and absolutely loves that and travels when they travel. She is maintaining a B average, and that is great! It was a big switch to switch from ACE cirriculum to textbooks, but she has done very well. We love our home, and spending our first holidays in it! Will post some pics.

Preston and Missie before surgery

Preston and Missie before surgery

Preston before surgery

Preston before surgery

Preston after his surgery

Preston after his surgery

Thursday, June 28, 2007

Home Sweet Home

WE ARE GOING HOME MONDAY, LORD WILLING.

I can hardly wait. Preston is excited too, I know.

We are getting everything we need including a hospital bed, etc. and probably he will be taken home in an ambulance. We just can't get him and out of our car right now.

We have had 2 ramps given to us, pending pickup. Jr. will be able to use the wood to build a ramp. We need a wheelchair ramp.

The discharge people here are so nice. She is calling different places to see when we can get Preston's therapies started. We may be able to get home health and therapists services through the hospital system. Everything is falling into place. We are just so happy that we are going home at last. We have been in here since April 31.

Preston had his G-tube put in Wed. and did fine with the surgery. They haven't started to feed him again yet, but are supposed to this evening, and then make sure he is tolerating the feedings, etc. And I have to know how to do all of that. It is not that hard; I am not worried about it. Just have to be careful to not let any germs get into the tube. All we need is another infection!

We got Preston up today; I know his tummy still is sore, but the more he can move around, the better it will be for him.

Just had to share out exciting news.



Norma Gwen

Sunday, June 24, 2007

Sunday, June 24

Well, we were moved out of PICU today, to the 6th floor (where we have already been 3 times) but the move went smoothly. We are hoping we won't have to be there much longer. On Wed. Preston will have his last surgery, Lord willing, to have a g-tube put in his tummy so I can feed him at home. Even though he may not need it for 6 weeks, it has to stay in that long. I think by then or before then, he will be eating again. He has been laughing a lot today! He laughs when someone says something funny or when watching dvds and he shook his head yes and no today! His mouth has been open more today and Jr. said his tongue could be seen some this a.m. All of this shows improvements, and he is closer to the day when he will be able to eat again. Today the PT guy got him up and he sat in a chair for a while. He can put weight on his legs and stand up, as long as someone is there to hold him so he doesn't fall. So slowly but surely Preston is coming back.
We could be home by the end of next week. We think we will probably need a hospital bed for now, and he will be tube fed, and in diapers for a while. The dr. has already been talking to some therapists about coming into our home to help Preston and also we hope to get Home Health to help with his baths, etc. each day. If Jr. were here all of the time, we wouldn't need them, but I really cannot handle him alone because he is such a big boy. So we feel everything will fall into place when the time comes.
We also are in need of a ramp as we have a lot of steps going up to our front porch. We are hoping there is some organization that will help with that. Jr. could do the work if we had the materials but right now we cannot buy all of the materials. But I have a friend in Easley who has a special needs daughter and has gotten help like this, so I plan to call her.
I am more encouraged now. Soon we should be home. I cannot wait for us all to be home again! Please pray the surgery on Wed. will be without complications, and infection free!

Saturday, June 23, 2007

Saturday update

Well, Preston is waking up more, and the feeding tube is bothering him. So the dr. said he would talk to surgeons and see when they can put the G-tube in his stomach, to be fed and given his meds. through. That could be as soon as Monday. If so, we could be home by the end of next week. Jr. told the dr. we would need help at home, but we wanted to bring him home to finish recovering, rather than the rehabilition hospital. Preston has been crying tears; not sure what all is bothering him. I think he will happier at home and will slowly recover. It looks like the end of this long hospital stay might be in sight. It will be a blessed day when we arrive home. We need a hospital bed, oxygen, feeding tube products, etc., and all that has to be worked out before we get home. We are putting the hospital bed in the living room so he can be part of the family interaction. We don't want him stuck off in a room away from us. Please pray all of these things will fall into place and SOON! We are so ready to come home.

One of our day shift nurses was talking to me about Junior and how wonderful he is, and I totally agreed. He works, comes to hospital and stays every weekend so I can come home and rest and sometimes through the week. If he sees I am getting overwhelmed he sends me home to sleep. Then Jan, the nurse, went on to say that "our faith" played a big part in our family, and I was so glad she could see that. They have noticed how much Preston is loved by all in our church, and how much company we have had even though we have been in there 8 weeks! It has all been a good example to them.

Norma Gwen

Friday, June 22, 2007

Friday, June 23rd update

Well, so much has happened since I last updated.

Wed. Preston was very sick all day. He ran a high fever, and his breathing was labored. When Jr. came to the hospital and saw his breathing problem, he put oxygen on Preston and set it at 3 liters, and it helped him. The nurses or respiratory therapist didn't even care enough to try and help him. He was able to wean him down to 2 liters. Today was the first day he actually came off the oxygen again, and I weaned him myself today and took him off.

Then yesterday at 6 p.m. our nurse, who by the way is a super duper nurse and now a friend, came in and said the dr. had written orders for Preston to be moved to adult ICU. I asked why and she said because of the census. Hello?? We had 3 patients and they needed the bed?? I realize more admissions came in, and I was told there were 10 patients and that was not the truth. There were 8 and lots of empty beds, and I was told there wasn't enough nursing staff, and I found out later they called more nurses in. I told them he was not going to adult ICU. Jr. and I have stayed with him for 8 weeks and then they will send him down there where we cannot stay with him? No way. He would not do well and neither would we. I hate to say this, but I don't trust them to take care of him properly. We have seen the laziness of many of the nurses in PICU and if I wasn't there, he would lay wet for who knows how long. The charge nurse said Dr. Johnson, the neurosurgeon said it was ok to send him to ICU. Come to find out that was also a lie as he has been gone since Wed. Anyhow I told her to call Dr. Johnson and tell him to come and take the external shunt out, and I would bring him home before he would go to ICU, or take him to another hospital. So they decided we could go to the peds. floor, just outside the PICU. At 9 p.m. I was still waiting to be moved, and our nurse Nikki called and they said give them 10 min. So they called back and she gave them the report and then the charge nurse called and said we could not go there, and were going to 6th floor. But I had been told there were no beds on 6th floor earlier. At 10 p.m. I was still waiting and Preston was sound asleep. When Nikki came in I told her I wanted to file a complaint and she offered to call the nurse manager for me! She told the lady that she had taken care of us for months (2 actually) and we felt we were being pushed around, etc., so she called me and told me we could sleep there last night and she would come in and talk to me this a.m. and try and straighten this out. Well, she came in and said sometimes the medical staff don't use common sense! She said as long as Preston needed ICU that he would be in PICU! She apologized.

Preston's fever is better, and he was up yesterday and today in the wheelchair. I took him downstairs in the wheelchair and outside for a walk, in front of the hospital. I thought the fresh air and sunshine would do him good. I plan to do this every day next week. The physical therapist is a man and can get Preston in and out of bed alone, and into the wheelchair. I might be able too, I haven't tried yet. But I won't worry about it as long as we are there and Todd can do it. He made Preston stand up when he got out of the wheelchair and he could do it, with support. He is now on a muscle relaxer to help his muscles not to be so tight.

We are most concerned about the feeding tube. He cannot come home with the current feeding tube in. He has to have a NG tube or a peg inserted in his tummy, as what he has now is only for temporary. I don't want him to have to have another surgery to have the peg put in, but we may have to. We will see how he is doing by the end of next week. The speech pathologist has worked with him this week and there is some improvement. But it can be a long process before he is ready to eat and swallow properly. We definately don't want him to asperate.

So that is the latest. Jr. and I both feel he would be better off at home and get home health, physical therapy etc. to come into our home, than for us to have to go the Roger Peace Center for rehabilition. We feel he will do better at home, as we have been in the hospital so long. So he may have to come home being tube fed and in diapers.

Thank all of you who came to the hospital on Preston's birthday, brought gifts, cards, balloons, etc. He was so sick that day that he really didn't even seem to be much aware of it all. But we have saved all of his cards and he can see them later, and he now has $100 to spend later, due to all of the money he has received since he has been in the hospital and for his birthday. Our nurse that day couldn't believe how many cards Preston received for his birthday.

Thank you for caring about him, and us during this most difficult time. It is hard to believe we have been in the hospital for 2 months.

Tuesday, June 19, 2007

Tues, June 19th update

Well, Preston had surgery yesterday evening about 5 p.m. and we got back to PICU about 7 p.m. He did great with the surgery and SO FAR THE SHUNT IS WORKING!!!! PRAISE THE LORD! If it continues to work, we are finally seeing some light at the end of this long almost 8 week tunnel!
Tomorrow he will be 19 years old. We cannot have a cake for him, but when Jr. gets off he and Missie are coming and we have some gifts for him. The child life lady here today found out that tomorrow was his birthday, so I think they are going to do something for him.
My inlaws came down to see him today. Dad has to preach tomorrow night so they couldn't come tomorrow. We couldn't get him to smile until Bro. Oliver came by. I was telling Bro. Oliver something he had said before he quit talking, and he started smiling and we even got him to laugh after that. So that was real good.
Todd with physical therapy worked with Preston today. He said his legs are stronger and he had him up sitting on the side of the bed for 10 minutes. So we are excited about that.
The floor dr. said if he isn't ready to eat by the end of next week, they will have to go to a different feeding tube. He could possibly have to have one put in his tummy, called a "Peg." But we will see how that goes between now and then. He does not like the Speech Pathologist to mess with his mouth. He fusses when he sees her. But she is going to try and work with him a couple of times tomorrow. So hopefully he will let her. I sure hope he can start eating soon.
There are only 3 patients in PICU, so it is quiet! We were down to 2, then got a twin baby admitted this afternoon. So it is easy right now to get lots of help!
I have been so sleepy today, from sitting around, and from the trip. I took a walk outside and around part of the inside of the hospital.
My friend Joanne has 2 teenage daughters. They are splitting the week and staying with Missie so she can be home. I am so appreciative of this. I know it is hard to spare them, as they are such good workers and helps Jo with the babies. Thank you Jo, for sharing them with us this week.
So that is the latest. Here's hoping and praying that each day will be a little better for Preston.
Thanks for praying, and please continue to remember us.

Norma Gwen

Monday, June 18, 2007

Help at last?

The PICU dr., Dr. Avant came in and talked to Jr. and he says that when Preston's body goes rigid, heart rate increases and sweats, that he is having "storms" which is too much electrical activity in the lower part of the brain. Finally a young dr. thinks he has the answer to this problem. There is a medication to help this, and he is putting Preston on it today. It may take months to rectify, and he may never be completely over it. It occurs often with brain injuries; with Preston it is due to the many brain surgeries and the infection he had. PTL we might be getting somewhere finally in this area! He said it is like having a leg cramp over your whole body. Can you imagine? I am so glad this dr. thinks he has the answer. I pray it is the right answer.

Sunday, June 17, 2007

Monday update - I am finally home after driving 1,000+ miles!

Well, I am exhausted. I left Fri. afternoon at 2 p.m. to go to TN to get Missie. She was calling and crying because she was homesick. I just back tonight with her; I drove 1,070 miles. Jr. has been with Preston all weekend. I have lots of laundry and stuff to do. I have to get clothes ironed and ready to take to the hospital, as I go tomorrow and will be there until Fri. unless I get to come home one evening for a little while. I want to be home so bad. We all do.
Lord willing, tomorrow Preston will have his shunt internalized. He has been running a low grade fever today, but I hope everything is ok so he can have the surgery. If he can and the shunt works, we are one step closer to his recovery and our homecoming! He had blood drawn today and a chest exray done in preparation for the surgery. PICU is so quiet tonight; they only have 5 patients up there and Preston is one of them.
Preston was so happy to see Missie this evening. She got him to laugh. She really missed him. And I am sure he missed her. He would reach for the phone and try to talk when she would call him today.
Please be in prayer for the surgery tomorrow at around 3 p.m. Lord willing.
I am so glad for safe traveling mercies. I had to go way down into TN to get Missie, where we used to pastor. It was good to see Savannah again but I didn't get to visit anyone except my best friend where I stayed and some of her relatives. We don't usually travel on Sunday but we had to today, to be home for Preston's surgery tomorrow.

Tuesday, June 12, 2007

Tues. update on Preston

Hi, I am just on the computer now for the first time since Sunday. Sunday evening when we had company Preston was smiling, and even said "nineteen" when we were talking about how old he would be on June 20th. We all clapped when he said it. Then when they got ready to leave he put up his hand so they would shake it. I was so encouraged, but then about 10 p.m. he had a seizure It lasted over 7 minutes. They always wipe him out because they have to give him extra meds. to stop the seizures. They gave him 2 extra doses of seizure meds. plus ativan. So my hopes were dashed again. Every time he takes a step forward he seems to have to take 2 backwards. My heart breaks for him when I see him lying in that bed not able to do hardly anything. He does smile at us some, though, and I love to see his smile and his eyes looking at us.
Last night at midnight he had another seizure, started to come out of it, and went into another one. They ended up giving him more meds. to try and stop. His heart rate went up high and his oxygen sats. went down and he had to be given some oxygen and it just came off tonight. Needless to say, he has been wiped out today and has slept a lot. The CT scan from Monday showed fluid on the brain. So we have been waiting to see when they will do surgery to internalize the shunt. The ICU floor dr. and infectious disease dr. say he needs to have it done. I waited all day yesterday for his dr. to come in and finally one of his partners came in at 8:30 last night and said he wouldn't be back until today. When I left at 7:15 he hadn't showed up yet. I want the surgery done asap. We have to get Preston back on the road to recovery and soon!!! Just pray the shunt will work when he has it put in and also that he won't get another infection. It has been and will continue to be a long hard road for us all. It hurts me to see him like he is. He cannot eat, talk, get up, or anything. He even forgot how to cough and that is so pitiful. All of these things should come back in time. He did say yeah to the nurse today, and yesterday it sounded like he said momma. He tries to talk. When he gets agitated I sing to him. I sing, "You are my sunshine" and "Amazing Grace." It seems to help calm him down, and I cradle his head in my arms and rock him as best I can. I was rocking, and praying, and putting cold rags on his head during the night when he had those bad seizures. He has never had seizures like this before. I know it must be so scary for him.
Please pray for us. I have been discouraged today. It is hard not to be when you have been in the hospital for over 6 weeks and he is not better, in fact he is worse.
Well, that is my update. It will probably be Fri. before I get to do another one.
Please keep praying for us.

Norma Gwen

Saturday, June 9, 2007

Saturday update

You know, when Preston gets well, I don't know what I will write about on here. Things will be so quiet and calm (maybe I am dreaming) around here when we are finally home again as a family. It will take many weeks of recuperating though, for Preston, so it will be a while before things are quiet around here, I am afraid.
Today Preston had a pic line put in, and it was not quite in the right place so they had to work on that and they got it right the 2nd time around. Then he had his small feeding tube put back in and it was hard to get it in, but it is in and he is being fed. He is waking up more now. Jr. said he has been trying to pull off his oxygen mask. Jr. was teasing him about sounding like an elephant with the mask on, as he used to tease Jr. about that with the c-pap machine that Jr. has to sleep with every night. Preston pointed at Jr. when Jr. said that! He was telling Jr. he was the one who sounded like an elephant! Then when I got there he started fussing and pointing to his left. I finally figured out by asking him question and he would move my hand to answer them, that he wanted to go to the potty. But since he is so weak right now, I told him we would put a diaper on him and he could go and it wouldn't mess up the bed. So we put one under him and he calmed right now and went to sleep. He is awake enough to know that that his stomach was hurting and he felt like he needed to potty. He was moving my hand up and down for yes to answer my questions. Missie got him doing this when he wasn't able to talk. But he hasn't been even able to do that again until today. He is following people with his eyes and turning his head to see people!
Jr. and I were talking today. When we made the decision for them to give him more powerful meds. to stop the trembling, and if it decreased his breathing ability to not put him on life support, it is as if he started to do better. Jr. said maybe the Lord was seeing if we were willing to let him go. When He saw we were, He turned things around and gradually he has been doing a little better. I'll never forget how we came out of that room after talking to the dr. where many tears were shed, and Bro. Armstrong was standing by his bed and said he had only trembled once the whole while we were in. We thought the nurse had given him meds. and when I asked her she had not. God definately touched him; after we had committed him back to God.
It will be a long hard road of recovery for Preston. But we are hoping that he can do most of the recovering and therapies in our own home. Please pray with us that we can get the help we need to come into our home and medicaid will pay for it. God is so able to work it all out.
The floor dr. in PICU feels Preston will have shunt surgery this week. So if he does and has no complications, and it works, we will be elated!
I have been home last night, some of today, and I have thoroughly enjoyed it. I have done washing, drying, ironing, vacuuming, etc., but it was so nice to be home and relax. Jr. is with Preston. I was becoming overwhelmed and worn out by being there so much and I needed this break so bad.
Thanks for praying, keep the prayers coming.

Our daughter

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.

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.

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.

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.

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.

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.