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
Thursday, June 28, 2007
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!
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
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.
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
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.
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.
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