May 30th update

Well, we were moved out of PICU to the 6th floor in children's hospital. The drs. and I wondered if Preston might have ICU psychosis. I don't know, but we are hoping that is true. He is having swallowing and talking issues. It is so hard to see him try to say something and cannot get the words out. And we are having problems with him taking his meds. because he is having problems swallowing. Sometimes he cannot even remember how to suck a straw. It is so heartbreaking and discouraging. He is now going to have to have speech, occupational and physical therapy. He is sooo tired of being in the hospital and people bothering him. So I don't know how it is all going to go. We are sooo tired. He didn't want Pam to stay with him tonight, so Jr. stayed. I am so exhausted. Last night was hard. I think he will get more sleep on the 6th floor. He may be able to have the shunt internalized next week. But what of all of his other problems? It is supposedly caused by the infection, and it can take weeks for him to get better. Only God knows the future. I can only take one day at a time. Junior feels like he will recover from the loss of speech, etc. Preston responds to Missie the best of all. He hugged her tonight and will squeeze her hand when she asks him questions. It is so beautiful to see her love and caring for her brother.

The little girl next door to us in PICU, pulled out her respirator and I guess she coded. All of the alarms went off and someone yelled, and everyone went running in there, and the mom came out crying, and I went and put my arms around her and held her while she cried. Then the nurse told us we could go in the room and sit for a few minutes, and they got the little girl stablized and Missie and I stayed with her. Later the mom came and thanked Missie and I both and hugged us. Outside of their room when I was holding her, Missie said, "Momma, pray with her." I did! She was so tore up. The little girl was stablized and is off the respirator and breathing on her own. She has a cancerous brain tumor on her brain stem that cannot be removed. Please pray for Dorrie, that is the mom's name, and her family. They have 2 little boys and the little girl is not quite 2.

I heard a song one time by Jeff and Sherry Easter and it is entitled, "The Unexpected Cross is Always Hard To Bear." How true that is. I didn't expect that Preston wouldn't be able to talk or eat. He drank a ice cream float today, and ate ice cream, and mashed banana, and some yogurt. So I will try and give him the same tomorrow until he can eat solid food.

Thanks for praying, and please continue to do so.



Norma Gwen

Sunday update

Well, I don't get to update as often as I would like.
Preston is taking a long time to bounce back this time. He had the seizures and then had to have emergency surgery on Tues. I hope there will be no lasting effects, but that soon he will be feeling better. He told me today he was losing his speech. He is just so tired and has some trouble talking. He gets up with help and goes to the bathroom and sits and rocks for a while. Jr. feels when the tiredness wears off from the surgeries and seizures, he will be ok. I sure hope so. He went down such a long way from the previous week to this past week. It is so sad. He seems to have no desire or joy for living. I hope he will again, soon.
The spinal fluid culture did not show any bacteria growth. So hopefully the bacteria is getting out of his system. Friday he told me when the pastor was there, that it might be time for him to depart from this earth. I said, "What about mommy? Do you want to leave her?" , He said, "If I have to go, I have to go." The pastor feels he is talking this way because he has been in the hospital and been so sick.
Junior has been with Preston for the weekend. I go back in a.m. and stay until Friday. He is planning to mow the grass tomorrow and then back to work on Tues.
It is just hard not knowing what the future holds. But we can only take one day at a time at this time.
Please continue to pray for him.

I am finally back

I have had trouble getting the computers on 5th floor, where Preston is now, to work, so haven't been able to send an update.
He runs quite a high fever but tylenol relieves him. His lungs look better, but he needs to suck in on that thingy magigy LOL every 2 hours like he is sucking a milkshake and now they have taken his cathedar out, and he can get up with help to use the bathroom. He is still extremely tired. I fed him his breakfast this a.m., he ate a piece of french toast, couple bites of eggs, and drank chocolate milk. He is too tired to feed himself. They put him in a more comfortable bed today after we bathed him. So we are doing ok for now. Yesterday we had lots of company, but he only was able to speak to the ones who came in the evening. But it is great to have so much company because it means that people love us and care.
My mother in law is staying at our house with Missie, and that is a huge help. My sis in law is coming on Monday, and staying all next week. So we have that much time covered. After that, we will see. Missie will be gone, Lord willing, to TN to youth camp the first week of June. She has so counted on this youth camp.
Junior is coming this evening after work, and relieving me so I can go home and shower and wash my hair, etc.
So that is the latest up to this time.
Thanks for all of the kind messages, love, support and prayers. It means the world to us.

Norma Gwen

Tues. p.m. update

Wow, what a loooong day. Preston started having seizures and we couldn't wake him up. I was there alone with him. It was so scary to see him seizing because he tried to tell me something and then he was seizing. So I think he was trying to tell me he was having a seizure. He always does and they can be scary, but usually they are not that bad. Anyhow, Jr. was coming, but they rushed and took Preston to surgery and took out all of the hardware and put another external shunt in. He had to be on the respirator longer than usual and they called Jr. and I down to recovery. He looked awful. But we were so surprised that in a few moments they called and said he was off the respirator. I was thanking the Lord for that. They moved him back to PICU, I specifically asked his dr. to not put in regular ICU because they won't let us stay in there. So he said he wouldn't. Anyhow, he got agitated a couple of times in PICU, but we got him calmed down. When I left the shunt is draining and he is resting. Praise the Lord for that. If this is scattered, I am sorry, it has been a long day, and I am headed to bed.

Norma Gwen

Tues. a.m. update

Well, I do not have a good update. Fever is not real high, but he is not responding and we cannot get him awake very easily. Dr. Johnson has ordered a CT scan STAT and he just got back from that. So I am waiting to hear from him. We feel he has fluid on the other side of his brain. The internal shunt seems to be doing well for the right side, but if there is fluid on the left side, then something has to be done about that. I just don't know how many surgeries he can keep on having. I am not trying to be negative or pessamistic, but I don't want him to continue suffering. I have released him to the Lord, if He wants to take Preston to Heaven. I will miss him and grieve for him, but I don't want him to keep suffering. He has suffered so much in his 18, almost 19 years. Junior is more optimistic. He feels if they can put another shunt in he could be home by the weekend. Only God knows. But I know in Heaven he would be normal and happy. I keep thinking of the song that Greg and Susanna sing, "If you could see me, now, the pain is all erased, you'd never want me to leave his place, etc." I have given him to God, to the best of my ability.
I should be hearing something soon.

Preston

Well, this surgery was minor compared to the first one he had 3 weeks ago today, but this has knocked his socks off, so to speak. He wanted some pain medication because his head was hurting so bad. So they are giving him morphine, and that is helping him to rest. I am glad he is resting. His O2 sats were in the 80's, so he has to have oxygen. His fever has been quite high and his white blood count is very high. I hope it is not infection. But it wouldn't be a big surprise after all of the surgeries he has had.

Junior went home to try and get a little rest; if things get worse, he will return. He missed all day at work today. I wonder sometimes where all of this will end. Only God knows that, and I have to trust Him. He hopes to get a few hours at least in at work tomorrow.

My inlaws are coming in Wed. and bringing cake and ice cream for Missie's 13th birthday, IF Preston is able to have all of the commotion in his room. It will certainly cheer her up if they can do that. She is with our former landlady, and has called a few times tonight as she was worried about his fever.

I hope to get a little rest tonight. I have been aching today from not having enough rest and that causes my fibromyalgia to flair up.

Will update, Lord willing, in a.m.

Came through surgery

but has quite a high fever and nausea, so they gave him tylenol for fever and phenergan for nausea and he went to sleep.

Bro. Dan Parker and Gail Hobelman was with us during the surgery and it was a blessing. Then Jr.'s aunt Beulah and cousin Wendy came over from Greer and stayed a while.

They did not put another external shunt in, just got the internal shunt working. So we will see if it continues to work. We hope and pray it does.