Friday news

Well, Preston is leaking fluid out of his incision again, which makes me wonder if he does need 2 shunts. Because the external shunt is on his left side, and he is leaking fluid out of his right side. The doctor said it was fluid, there is some around the internal shunt. But at this point, he is going to do surgery tentatively at 1 p.m. on Monday; maybe earlier if it can be arranged. Preston is not worried about the surgery but not being able to eat that day. This will be his 5th surgery in 3 weeks. They are going to see if they can get this internal shunt to work, if not, put in a new one. You know, sometimes I wonder if this will ever ends, because there is quite a bit of blood that is new blood coming out of his brain, due to irritation. Will it plug up the new shunt??? Only God knows. At this point, I can only live one day at a time. He is in good spirits and teasing and laughing. He has been an angel these past 3 weeks. I wish I would have thought about the shunt acting up much sooner than I did. But live and learn.

Yesterday was the first day we did not have any company. I am not saying this to complain, but to tell everyone that we have been in here almost 3 weeks and have had company every day but one. Isn't that amazing? We have already had company today.
Junior is going home after work to shower and get dressed in clean clothes, then coming over here and I am going home. I have to wash clothes, wash my hair, and do some things around the house. I need to clean all of the leftovers out of the refrigerator. Missie is due back any time, and will be going with me. Tomorrow I will come and relieve Jr. for a while so he can go home and then he will stay tonight and tomorrow with Preston. So I will get to sleep in my own bed!
My inlaws are planning on coming down for the surgery, but going back the same day.
I think I will keep Missie here next week and work on school. So we will see how it all goes.

I AM GLAD IT IS FRIDAY!!!!

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Thursday update

Things are the same today. Dr. said surgery should be sometime Mon. afternoon, have to get more info. on that tomorrow.
Junior came over after work and I went a couple of places to get out of the hospital for a few minutes. Then he and I went downstairs to cafeteria and ate together; that was nice. We miss each other so much. We are always together as a family, and this is very hard on us all. I am hoping if surgery goes well and that the shunt will work, we can go home next week.
Missie is coming back from Greer tomorrow. She will be with Junior or I over the weekend.
It is hard to believe Preston has been in here since April 30th. We are totally losing the month of May, it seems. Missie will be 13 on Wed. and it is supposed to be a special birthday and it won't happen. Around the first of June I hope to have something for her, Lord willing.
You know, siblings of special needs children miss out on some things. Even though we try to keep her life as normal as possible, it still happens. I hope when she is grown she can remember some happy times in her childhood. She and I are looking forward to our trip to Canada at the end of June. It will be good for both of us.
Well, that is all the news for today.

Update for Wed.

Well, we are here for a while longer. Monday of next week they are going in and see about the internal shunt, to see if they can flush it and get it to work or put in a new one, etc. He wants Preston to have a few more days to heal where his incision is (he's already been cut open there twice) so he said he would see if he could get time in OR on Monday. So we will be here for a while longer. He doesn't want to put 2 shunts in if he can help it; as the more systems you have in, the more complications you can have. But when they get the right one working then will see if he needs a left one or not. Right now he has some fluid on the right side of his brain, but not much on the left side. But that could be from the drama the right side of the brain suffered from the surgeries, etc.

The child life dept. had a party for the kids today in the activity room. A baseball team was here and helped the kids make something and then they had a chance to play a game and get a prize, and refreshments. Preston really enjoyed it. The dr. also said that when he gets up and around and then has blood coming from his brain that it is fresh blood but nothing to worry about as it is just some irritation in there. So! Some of my questions were answered today.

New Picture

I posted a new picture of Preston with his 2nd external shunt.

No more updates yet, as to when he will have more surgery.

Will update when I know more.

Tues. a.m. Update for Preston

Well, it was a no-go. Preston's external shunt got clamped off at 1:36 yesterday (Preston made sure he knew the exact moment) and he did pretty good at first. He seemed nervous and high strung, but alert. But fluid was building up in his neck under the shunt and he started feeling bad and got angry at the nurse, etc., so she called the dr. and he said to turn it back on. I was relieved, because he was getting hard to handle. Now we know the intense problems we had been having with violent outbursts in the past several months were because his shunt was not working properly. As long as he has the external shunt hooked up, he is relaxed and happy, even though he has to be in bed most of the time, and we are starting our 3rd week here. He laughs and jokes and is our "old" Preston, before the violent behavior started.

His O2 sensor was messed up about 5:30 this a.m. and finally it made a continuous noise and I turned it off and called the nurse, but I was wide awake so am up and ready for the day at 6:45. I know I will be tired, as I didn't get to sleep until after 11:30.

Many called yesterday to check on him, and we had some visitors as well, and we appreciate that. It helps pass the time to have friends to visit with throughout the day.

So will see what dr. says when he comes in. I DO NOT WANT TO TAKE HIM HOME UNLESS HE HAS A WORKING SHUNT, OR TWO OF THEM IF HE NEEDS THEM.

I just praise the Lord that He helped us to realize it was the shunt causing problems.

Jr. worked 6 hrs. yesterday, and will work 8 today probably. By Wed. p.m. I will need to sleep at home to get some good sleeping in, so I don't crash. Missie is in Greer with Jr.'s aunt, uncle and cousins, and having the time of her life. She has been here and yon, and is worn out too.

But the Lord continues to uphold us and give us strength. I look for Preston to have more surgery tomorrow or Fri. of this week. Will let you all know when I know, for sure.

Pray for a dear family in FL. A young mother died this a.m. of brain cancer, leaving her husband, and 3 young precious children, her parents, and brother. I became acquainted with her brother and his wife who live in Pickens. My heart goes out to her precious children. Her children are 14, 6, and 5.

Keep praying for us. I am so confident that you all have been praying and will continue to do so. It means a lot to us, more than words can ever say.

Today is the day!

Today is the day that we find out if the internal shunt is working.
Preston calls it the "big day."

My heart is sooo hoping it will work. Because he is regaining his strength and is in good spirits and he wants to come home. More surgery is not what he needs right now, having already had 4 in 1 1/2 weeks. We asked the church and friends for prayers for today, that God will work a miracle. We know he is able.

We are all exhausted. I slept at home the past 2 nights, and Junior stayed with Preston. I am headed back over there in a little while, so Junior can get to work.

Will try and update this evening!