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.

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.

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.

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.

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.

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.

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