I feel a ton better about Samuel’s moods and reactions since the Zyprexa is gone. He is much more alert, much more attentive and focusing on things much more today than the last 3 or 4 days. And he is not nearly as upset and “mad”. I also haven’t seen the flushing in his face, and he isn’t absolutely knocked out from 6 am to 2 pm during the day. It’s actually funny that the doctor that discontinued that medication for me wrote in the order that the resident or any other doctor was not allowed to represcribe it. She’s my favorite doctor and you can see why!

They finished up the EEG this afternoon and removed all the sensors from his head. He did have several of his “episodes” during the EEG, so hopefully, they can get enough info to tell me what they are. They also said they will review the entire 21 hours that he had the test and look at all the abnormalities in it to help us find ways to help him.

Then Dr. Gooch came in and put the botox in his back. She also put some in his glutious maximus (scientific term for back side)! They are really hoping to find a way to get him to stop arching his back. They’re afraid he is going to give himself scoliosis. In addition, they raised his dose in his baclefin pump to 45 micrograms per hour during the day and 55 micrograms per hour at night.

They also recasted his left arm today for the last time. They should be able to take it off on Monday and splint it. Then they will start working on his right arm. His left foot also has a brace that we put on it 3 times a day for 2 hours each time. And they may cast his wrists and hands in the future if needed.

Last of all, someone came today to talk to me about the G-tube surgery and the nissen. They aren’t sure still if he will need both surgeries because the doctor is out of town until Monday and hasn’t reviewed the results of Samuel’s test yet. But he will come in on Monday and explain what they want to do and then Samuel is scheduled for the surger on Tuesday.

Today I did get Samuel to sit on my lap in the rocking chair, face me, bend his legs around me and rest his head on my shoulder. He still would try to posture, but he was also a little more relaxed than usual. It was nice and gave him a little bit of a break from being so tense and tight and laying on his back. Hopefully, we will be able to find more and more ways to help him relax.

Keep up your prayers - like I always say. We will probably be headed home within the next 10 days or so. And we’re going to need lots of prayers then as we try to adjust to a whole new life with lots of time needing to be devoted to Samuel.

Thanks everyone for all you’ve done and are doing!

We love you!

Love,
Teresa, Samuel, Tom & the boys

I have also noticed that he hasn’t been focusing on much the past few days and he had been having more “seizures” when he first wakes up than later in the day. I am wondering if this is also caused by the Zyprexa. It can cause vision problems, flushing of the face and neck and says it should not be taken by people prone to seizures. I asked the doctors to discontinue it after the dose they gave him this morning and they did. So I am hoping many of these new problems will go away within the next day or two.

At 4 pm, they hooked him up to the EEG machine. It had 22 electrodes that were hooked to his head and chest. They will monitor his brain waves for about 18 hours. I have a schedule where I write down every time he has an “episode”. I also press a button that indicates to the computer that it is happening. I hope they can figure some things out from this test. I know nothing about it, but I certainly see that he has plenty of brain waves. I just don’t know if they’re headed in the right directions.

Tonight he fell asleep by 9 pm with a dose of tranxene at 7 pm and a dose of clonadine at 8:30 pm. He will be able to get melatonin and ambien during the night if he needs it, so hopefully he will sleep. His baclefin pump is still set at 1150 micrograms per 24 hours, but he gets less of a dose during the day and more at night to help him sleep.

The doctors now are mostly concerned with getting his feeding figured out and then finding something to help his back and hips. They are concerned that he is going to cause a curve in his spine from always pulling in the same direction. They don’t know if maybe they can figure out something to ease that or if they can raise the medication in his pump again. We will see. But they are trying to reduce his medications to just the ones that are definitely helping him so that he won’t be so sedated and have so many complications from all of them.

I haven’t seen the sleep apnea except for a few times here and there. I do think it is related to different medications and it will subside as things level out.

Well, that’s all for tonight. I’m pretty tired and ready for a good night’s rest. I sure am glad for everyone who has helped us so much. It’s comforting to know that we’re not alone in all this. Keep the prayers coming. We need them. We might be headed home in the next few weeks. Pray hard that we’ll have the strength to do this and that Samuel will continue to progress and get better.

We love you all!

Love,
The whole Jewkes clan!

I grabbed the oxygen and turned it on and put it near his face. But his stats didn’t change. So I proceeded to wake him up. I stretched his arm and shook him a little and he started to wake. He looked like he was trying to gag, so I turned him on his side and he threw up. (That would have been the 4th time that day he had thrown up.) As soon as he did, his stats came right back up. Then a few minutes later they dropped again, but this time down into the low 80’s. Again he looked like he was gagging, so I turned him on his side and he threw up again. And his stats returned to normal.

Well, his bed was a mess, so I said I would hold him while the nurse changed the bed. As I picked him up, I realized he was totally relaxed. I put him on my lap, sitting up, with his hips bent, his knees bent and his head resting back on my shoulder. He just sat there looking around for about 15 minutes. He didn’t posture once. And then he sat there another 15 minutes dozing off to sleep. It was so wonderful I couldn’t hold back the tears. It was the first time since the night before his accident that I was able to hold him and rock him in a relaxed state like I do every night. I sang to him and even repositioned him a few times and he remained perfectly calm. It was a gift and I was so very thankful for it.

They said he slept until 6 am and then they gave him some Zyprexa and some Clonadine and he went back to sleep from 9:30 am until 2:30 pm when I finally woke him up. He woke up in an awful mood. He has been doing that the last few days and will wake up more “angry” than I have ever seen him. It seems to subside within an hour or so, but I do not understand what is causing it and I don’t like it.

Then we went down for an hour long test to check for reflux and then an hour of therapy. He is still having those “seizures” and they are scheduled to do his EEG tomorrow. He bit his check pretty badly today during one of them and they are a little scary to watch. I will be glad when they figure out what they are. I am also concerned that he may be having these new symptoms as a reaction to the Zyprexa they started giving him about 3 nights ago. From what I read, it is a bipolar, schizophrenic medication that is sometimes used to sedate the elderly in nursing homes. I am concerned about that and some of the side effects it can have. I am going to talk with the doctors about it tomorrow.

Otherwise, it has seemed like a very short day because Samuel slept so much of it. His surgery for his G tube is scheduled for next Tuesday. Also, the cast on his one arm should come off either Friday or Monday and will be replaced with a splint. Then they can get working on the other arm.

I started to write a post earlier today and didn’t end up posting it. But I basically wanted to share with everyone how thankful we feel for gospel and the comfort it has brought us over these last weeks. We have been so blessed to come to truly know that God is watching over Samuel and that whatever happens will be his will. It is the most comforting feeling in the world to know that someone who cares more for Samuel than I do is watching out for and in control of his future.

Thank you all for your prayers. Please keep them coming because they are working.

We love you all!

Love,

Teresa & Samuel

Saturday, Sunday & Monday nights, Samuel went to sleep between 8 and 9 pm and woke between 2 and 4 am. He doesn’t like to go back to sleep then and often stays awake until his morning meds at 8 am and the takes a nap then. We’d like to see that improve so that he sleeps through the night.

I also have noticed that Samuel is doing something “different” than I have seen before. He started doing it Saturday. It reminds me of something he was doing in the intensive care unit just a few days after the accident. He will pucker up his lips, clench his teeth together, roll his eyes partly back up into his head and then stare into space and hold totally still for maybe 30 seconds or so. He does not posture during the episodes and does not seem to be coherent. I think they may be seizures and have asked the doctors several times about them.

Today, the “seizures” were worse. He would get upset and start crying and his face would get really red and then his eyes would roll into his head and he would open his mouth wide and look like he was going to gag. Then his lips would pucker up and his eyes would roll partly into his head and he would stare straight ahead. All the while, he does not posture but is very relaxed. They last a few minutes and have happened at least 7 times that I have seen today. I again approached the doctors and they indicated that they would do an EEG on him tomorrow to see if he is, indeed, having seizures.

Last night, he had an episode at about 11:30 pm where his oxygen dropped to about 80 and then again to about 70 (5 minutes later) and then again much lower than that (about 5 minutes later). The third time, they had a difficult time getting his oxygen levels to return to normal and he turned pale and a little blue. They gave him oxygen and his stats returned to normal as they woke him from a very deep sleep. He has been fine since. They are again blaming the meds and have stopped his oral baclefin along with the medication that helps with Parkinson’s disease. They also reduced his pump baclefin during the day and raised it during the night to try and help him sleep. Otherwise, they are trying to do a better job of staggering his meds to keep him from getting sedated by any one of them.

They have scheduled the G-tube surgery for next Tuesday and are planning on doing a reflux study on him either tonight or tomorrow night. That will determine whether or not he will get a Nissen where they sew the top of his stomach around the bottom of his esophogas to keep him from refluxing or throwing up. So we will see on that.

Last of all, the car wash my sister held this past Saturday was a great success and a lot of fun. We want to thank her and her softball team and my kids for helping out with it and everyone that showed up! We especially want to thank the old guy out back washing tires and drying cars!

Thank you everyone for all you’ve done. Keep up the prayers and the optimism. I still have great feeling about Samuel and how well he can do. He’s a tough little boy!

Love,
Teresa & Samuel