Tiring day

Well, I don't like afternoon appts. especially when the ambulance service is late getting us to our appt. and then this doctor's office that we went to today was not accomodating like the other places we have been, since we have to be transported by ambulance. AND the EMS personnel left us there, and this is the first time that has happened. The offices usually get us in and out quickly and the EMS people stay right there and bring us back home. Well, today that didn't happen.

Anyhow, the dr. says we may never know why Preston has had jaundice. It could be meds., of course, but he felt the medication we stopped was not the reason, but if it isn't, why does he seem to be getting better? He is not quite as yellow plus his stools are back to normal color. But since the meds. is getting out of his system, Preston has started shaking again. He had quite a long time of shaking today when we first got there. He was having what the neurologists called a "storm" so now we have to get him on another medication for that. Oh me! So in a.m. I will call neurosurgeon and see what they say. But I just remembered, he is not in his office tomorrow.

We are going to Greenville Memorial to have an ultrasound done on Thurs. a.m. and more blood work to see if the levels have come down any. We have to be there at 9:30. I dread it soooo bad. It is hard when you have to wait for someone to come and get you, and wait for someone to bring you back home, etc. But such is life right now.

So that is all I know right now.

Over and out for this time.

My trivia question for today is

How long can a person's liver not be functioning properly, before that person will get very sick???? Preston is still very jaundiced, I mean he is yellow! But he is not sick. If the bile is not leaving his body, why isn't he sick from it? I guess we will find out Tues. He goes to the gastro-interologist on Tues. afternoon. He is very excited to be riding again to the dr. and back in the ambulance. He enjoys that. I just hope he doesn't get sick from this, and that it will go away. We don't need any more hospital stays or a bunch of tests run, which is what he will have to have if this doesn't clear up. Things are doing well, why this????

Junior and I got him up today and got him in the shower, and he sat on his shower chair and we gave him a good shower and washed his hair. He said it felt good. We are going to have to do this at least 2 times/week. Soon I will have help and we can do it more often, during the day. By evening, he is very tired. He goes to sleep about 8 p.m. or shortly afterward. He still has a lot of healing to do, and maybe this malfunctioning liver problem is attributing to his tiredness. But he is talky and listens to his stories on cd or tape every day. The pastor came today and he really enjoyed that. He visited with him. It is sooo nice he can talk again.

Gotta get to bed.

Interesting tidbit!

Well, my sister will probably kill me, LOL but I have to tell you that today is her birthday. I know the day is almost over, but nonetheless it is her birthday until midnight. Well, what is interesting is that she and I are NOW THE SAME AGE, until my birthday. I think that is neat. Now I am not going to tell you how old we are. But on Aug. 11th I will then change my age, and we will no longer be the same age. But I enjoy it the 2 weeks that we are!

Preston is still very jaundice. I called the neurosurgeon today to see if they had made him an appt. yet with the proper doctor, but they didn't even call me back. I guess they had nothing to tell me, so didn't call me??? I just don't want him to get real sick and start throwing up etc., and we end up taking him to the ER. I want to avoid the ER if at all possible.

He was up sitting and rocking in his chair twice today. He had OT and PT. Tomorrow he has speech and the nurse comes. His blood pressure is doing fine now that he is off his meds. I am still hoping and praying that it was the meds. and eventually it will all be flushed out of his body and we can go on with life! Things are going well, except for the jaundice.

Junior got off after about 9 hrs. instead of 10 today and I was able to go to town. I ran by a thrift store and met up with one of my friends, and all books were 4/$1. I bought several to sell. I didn't get any put on tonight. I vowed to go to bed earlier and it is now 10:25 and I am still up. I worked on altering a black & white composition book for someone to use as a journal. I hope to finish it tomorrow, only have one little thing left to do.

So I am off to bed so I can get up earlier in a.m. We need to clean house tomorrow. It doesn't even get dusted every week now, since Preston has been sick. Oh well, the dust will be here when we are dead and gone.

Monday

Well, today has been another busy day. Yesterday Preston had a visitor - one of our neighbors and he was so glad to see her. Anyhow, today speech came, and then the RN from Community Longterm Care and got all the paperwork out of the way. We can chose our own person to come in and take care of Preston and they will pay them, and the take home pay is $10.03/hr. So I already have someone in mind and have called her and she wants to do it. It is a good friend of ours whom Preston loves, so this will work out great. It may take 2 weeks or so to get Preston in the system. They are going to have a ramp built for us, help us buy diapers and wipes, and many services.

Preston has jaundice, he is yellow all over! So in a.m the home health nurse has to draw blood for a liver profile. I hope if he has to have IV's to flush the jaundice out, that it can all be done at home. That is one good thing about having home health! I have left off 2 doses of the meds. that is probably causing the jaundice, so hopefully his blood pressure will be ok. It was fine this a.m. when the speech therapist took it.

Missie is spending the night with a friend and going to NC to Ghost Town tomorrow and she is in 7th Heaven! She will be gone until late tomorrow night, but she is so excited about going. I will miss her as she is a big help to me.

Gotta finish supper dishes.

My mom

Well, my mom was a beautiful bride. My stepsister sent me pictures and they are sooo pretty, but I cannot figure out how to get them the right size, I was going to upload a picture of her and Jim, but it came out too small. She has always been a pretty woman, and I have as many gray hairs or more than she does and she is 75. The wrinkles around her eyes and nose and on her forehead are from squinting her eyes because she has poor eyesight, otherwise, I am not sure she would have any! Jim is a handsome man of 80, but very agile for his age. He gets around even better than mom, as she does have some arthritis. I am excited to go up and see them, maybe by the end of August!!
This is my mom's 3rd marriage. She never had a church wedding before and was able to have a small church wedding and from all reports and seeing what pictures I did, it was beautiful. I am so happy for her. She has been a widow for 20 years this last time. So it will be an adjustment for her, but the Lord sent her a wonderful husband. Pray for them as they start their life together!

Sunday

Well, today is Sunday. This a.m. Missie was awakened by Preston calling because he was wet. So Jr. and I got up and changed him, and he also needed his meds and to be fed. So I mixed up his meds, and Jr. fed him and I went back to bed, as well as Missie. Missie has had a cold all week and hasn't felt well. I am just sooo tired. So I went back to slept and slept until after 11. Felt so good to know Jr. was in control and I didn't have to worry about a thing. The down side of that is that none of us got to church. But the Lord knows all about it. It seems I finally have hit rock bottom from all that has happened. Soon I will feel like myself again. I cannot stay down for very long. It just isn't my personality.

Missie was to go on a camping trip for Mon. and Tues with friends and that was canceled and I was truly relieved. I felt like I needed her to help me here. I felt bad she didn't get to go, though, since she really wanted to.

Preston has jaundice and I did some research on internet and found out which medication is causing it, so have put a call through to the dr. on call. It is his high pressure medication that is causing it. It said to call immediately so I did that, and waiting to hear back. The pharmacy is open this afternoon and I was hoping they would call something else in. I don't want to take chances with his blood pressure.

So my life goes on. My abnormal life, but I should be used to that now. I just wish I was about 20 years younger. I could handle it better for sure.

Saturday

I am glad it is Saturday. Jr. worked from 6-12 then has been home with us and that has been so nice. We just had a quiet afternoon. We got Preston up and I cut his hair and he was happy about that. He sat up for quite a while. His eyes have been just a sparkling today!

I have been feeling so tired, and then a headache, and not resting too well. I think maybe part of it is depression. I know I missed my meds. today, and have to be sure to take them tomorrow. I am very happy to be home, don't get me wrong, and very happy Preston is doing as well as he is, but I guess it all is catching up with me. I never talk to anyone or see anyone except the medical help that comes in, except maybe my mom, brother, my mother inlaw, on the phone. I guess I am kind of lonesome. We have no family, and not really any close friends. We just haven't had much opportunity to have friends with all that has happened in our lives since Preston has been born. I am so glad we have each other. Many times we say that is all we have, and God, too. I am not trying to put a guilt trip on anyone, but we have not had one visitor outside of medical people since Preston has been home in 3 weeks (will be on Monday.) I know people are busy and have their own lives. But I think it would help him a lot too to have company. I told Jr. I think that is why he is so happy to even have the nurse come by and take his blood pressure. Ok, so I am being a baby, but I guess I deserve to be after the past 12 weeks. I guess I am a little sad too because my mom got married today and I couldn't be there. She called me after her and Jim left the reception to go on their honeymoon. But Lord willing, Missie and I are going to fly up before winter for a few days to visit.

I hope tomorrow I will feel better. I will, if I take my meds. I try not to forget, or I start feeling down. Also, if I don't rest well, I don't feel well either. When Jr. got up this a.m. Preston was soaked. So he changed him, and then when I got up he was soaked again, and I had to strip the whole bed. It was a good hour before I got to eat breakfast, having to strip, bathe, give meds. and feed Preston. On Monday an organization called Community Long Term Care is coming and they will be helping with sending an aide etc. Missie and I will get to go places while she is here, if I can keep the car those days. They will also build us a ramp and help buy diapers.

Soon headed to bed.