Halloween Fun

Happy Halloween! Sophie’s is greeting everyone coming to the door, but unlike years past, Alex does not want to hand out candy this year. He discovered a video tape from 10-12 years ago and has been watching it non stop for 4 hours. It is call Kid’s Songs: Day at Camp. He laughs at the fish story and’ found a meatball’ song.

Drug change

He is back! Alex is almost ready to go back to school. Maybe Monday. We stopped Phenobarbital Tuesday night, cold turkey. And at the same time put him back on the drugs he was on before going to the hospital.

Within 24 hours he was alert, out of bed and ‘talking’ to Grandpa non stop.

A Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.




Too strange. He never has shown an interest in either.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given him Tylenol and Bentryl but they have not help.


Alex has gotten a rash. And along with the fever our Doctor wnat to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.

Sleepy Sunday

Alex had a pretty good night and day. His fever is back down but he slept most of the day. Even now, almost time for bed and he has been sleeping all day.

Marycke is hoping it is not the Pehnobarb but something is no sitting well with Alex.

Seizure Saturday

Well from 12:42 Am, 10:27 Am, 4:15 PM and 6:20 PM is seems seizure Saturday is an appropriate name for this post. Who knows why all the seizures. we did have a front move into town and also people are complaining about allergies. we learned early on that Alex is allergic to many things. Maybe that is causing the fever.

Whatever it is it is making for a stressful time. For the last 3 weeks Alex has been sleeping in our King size bed, with Marycke. Then unfortunately, more often then not, when Alex seizes, we pees in the bed.

But we did get a chance step out for an hour or so and attend the Epilepsy 'Day in the Park'. The park is in the flight path near the end of the runway. Alex enjoyed the planes but only for about 15 minutes.

He asked for Mac Donald's and at first said he wanted fries AND nuggets. But by the time we arrived to the drive through he only wanted a coke and fries.


Alex crossed the long bridge to the Park.















Then he 'signs' airplane as one passes over.

Fortune Cookies

Well Alex continues to surprise us. Tonight I got Chinese carry out. At the conclusion of the meal I pull out the fortune cookies. Lo and behold Alex reaches over, cracks one open and eats it. 21 years he has never eaten a fortune cookie.

Then he grabs another and another. Out of fortune cookies Marycke finds a serving of Apple Jacks and another of Lucky Charms. Wow neat to see him eat!

Bummer, time for bed and he has a seizure. Maybe it was not good for him to eat. From Biblical times to the present, epilepsy has been a disease shrouded in mysticism and fear. Seizures, which are now known to be a neurophysiological phenomenon, are the defining characteristic of epilepsy.

It has long been known that starvation is an effective, if impractical means of controlling seizures. There is even a reference in the Bible to starvation controlling "fits." Mark 6:29 "cured by fasting and prayer." The first scientific study of fasting as a treatment for epilepsy was conducted in France in 1910. The researchers concluded that seizures were improved by absolute starvation.

During starvation, the body first burns all of its glycogen. It then begins to burn body fat and protein for the specific purpose of supplying the brain with glucose. As fasting continues, the body shifts into a state known as ketosis. The brain begins to use ketones from the metabolism of fats as energy rather than glucose. This shift in metabolism also correlates with a reduction in seizure activity.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given Tylenol and Benedryl but they have not helped.



Alex has gotten a rash. And along with the fever our Doctor want to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.



Yeah! He is over 100 lbs again. Still not eating much more then smoothies and Ensure but at least he is not loosing more weight.



Meanwhile, Sophie continues to be very interested in Alex. Always trying to play with him. And when he has seizures she seems to know something is wrong. She comes over and licks his face or lies on top of him.


She is getting so big. She also is loosing her baby teeth and chewing on EVERYTHING. I always seem to have only one shoe. So Marycke went and got her a BIG bone. She seems to enjoy it!

Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.

Too strange. He never has shown an interest in either.

Play time for Sophie

Sophie has discovered the sprinklers. I never knew a dog could have such a fun time with a couple of sprinklers.

Better

Well, a litle sleep (for me and Marycke), Tylenol for Alex, and a 'bath' to cool him down and his temperature is back down to 99.3. If we can keep it under 100 the rest of the day I suppose no trip to the ER - today! Thanks for all the notes and prayers.

Meanwhile, ran across this video from last month. Sophie was trying really hard to wake up alex. But Alex sleeeps... he SLEEPS!

Neal

Still not eating

Unfortunately Alex has developed a fever of 102.4 So we expect to have to go back to university hospital this AM if we cannot get it under control

We are coming up on day 21 of Alex not eating (His only nutrition is Ensure that we giving him 3 times a day squirting it into his mouth with a syringe and hoping he does not spit it back out.) Not eating makes him very susceptible to infection. So Doctor Martin’s office wants to monitor him closely. We may also have to have a feeding tube put in.

On Thursday they determine his medication levels to be 200% of the therapeutic level which may account for his lack of appetite and sleeping 15-20 hours a day. The doctors are now backing off on the drug levels.

On the upside, no seizures for the past 8 days!

Alex Home

Yeah. Alex was allowed to come home late yesterday afternoon. Marycke called and said the docs saw no reason to keep him in the hospital and it would be okay to come home. Alex agreed and was ready to go right then.

As ususal it took a few hours but we finally did make it home. Sophie was happy to see him but Alex was not ready for sophie.


We thought he may eat more at home but not so far. He would not even drink anything. Maybe later today.

We are just happy to be home.

Alex Day 11

Early on yesterday afternoon Alex was up and doing well. we expected to go home today.











Marycke said he was waiting for 'Neal to call.' He kept the phone with him all night.

Well we have reached day 11. And does not look like we will be going home.
Last night Alex did pretty well. Nothing to drink still but ate some chunk cheese.

Then this AM he had seizures at 6:11 and 8:15. So I feel the doctors will want to keep him another day or two.





Alex recovers after seizure #2 this AM.



















The tech agrees to remove his 'hat'. Alex is happy!

For the past few days he has been sitting in a chair. No longer does he want to be in 'that bed.'

Thanks your all your care, prayers and notes.

PS. Marycke’s phone was damaged during one of the seizures so reach her at 210.358.1252

Day 8

Well Alex finally got out of bed and walked around for a while last night. And because of that, they removed the catheter. He was very happy. And because his O2 levels were good, the clip on the end of his finger was removed as well. Boy, life is getting good for Alex!

We watched the Cowboys play football and then finally we got to sleep just before midnight. However Alex stayed up to nearly 3 AM. Every 20 minutes or so he tried to pull something off or out of his body. He just is not a happy camper right now.

Come Monday morning, Alex is up earlier than I expected (7:10 AM) so we sat around waiting on Mom to bring breakfast. Of course the breakfast was for Neal as Alex still has not eaten anything nor has he gone to the bathroom on his own. Until those two things are accomplished we will not be able to leave.

I am going home for a shower and to check on PSU. But on the way back, Marycke called to say Alex has had 3 seizures. Maybe that is why he was not willing to eat. Needless to say with all those fluids being pump in and him not going to the potty, everything came out during this latest episode.

They have given him 2 does of Ativan and as of 2:30 PM, Marycke reports he has not had anymore. He is sleeping and may do so for sometime. So I imagine for now Marycke does not want any visitors.

Thanks again for all the notes and comments of the blog. Looks like we will be there even longer than we expected.

Neal

Neal and Alex discuss what can can cannot be removed.


Alex 'converses' with his faorite nurse, Rebecca.

Alex Update

Grandpa stops in to brighten Alex's day. He brought cheese and egg taco but still could not get Alex to eat. Well we had another 24 hours of ups and downs.

Alex did well last night. Sitting up and ‘playing’ with the nurses until after midnight.
He slept through the night and then got to enjoy breakfast with Grandpa.

Unfortunately it is the ‘eating thing’ that is keeping him in the hospital. He still has not eaten since Saturday night a week ago.
They tried the feeding tube of the nose without success. Next they are taking about a tube directly into the small intestine.

His seizures remain ‘below the surface’ but he is continuing to seize. His medicines appear to be working. The doc thinks we are past worrying about seizures from medicine withdrawal.

So we are focused on getting him to eat, walk around and then we could home. I expect with will be Tuesday or Wednesday at the earliest.

Thanks for all the notes.

I am going back to relieve Marycke. I will spend

the night and then be able to come back during the day to work on technoDOCTOR and PSU.

Alex self protrait. He likes to take photos of himself.

Saturday Morning

Alex was more awake over the past 24 hours. However he still has not had any food since Sunday.

The Internal Medicine doctors have decided Alex needs to be feed through a tube up his nose.

On the better side, his lungs have cleared up. The docotors feel his pneumonia is clearing up. More than once Alex has pulled off his head bandage. Here Dale has to reapply it.

Last night around 4 AM he woke up and realized he had needles in the arms, a catheter, his head rapped, something clipped to his finger and both legs wrapped with something squeezing them to increase circulation. He let out a very BIG yell. Both RNs came running and I said, 'He is awake.'

Now we have to figure out how to keep him from pulling everything off. They considered restraints, we suggested some type of homemade sleeve, but the decided on 'boxing gloves'. Soon they went. The RN was very pleased with his work until 2 seconds later Alex had one off, had tossed it across the room and was proceeding to try and remove the wrapping from his head.

Okay back to last night. From 4 AM to 5:10 I am by his bedding trying to get him not to pull any thing off. He falls asleep. Sure enough 15 minutes later the nurses are in to 'turn him'. Alex gets

He is showing some signs of bedsores and inactivity.

Okay I get him settled back down and 10 minutes later it is time for 'vitals'. Once again he gets wakened. Again becomes agitated (mostly because I think he does not understand he can go 'potty' while still in bed.) So now we have got him back asleep a little after 6 AM. 6:15 it is the respiratory nurse. 'We have to give Alex his treatment." So now they hold a mask over his nose and mouth for 7-8 minutes and pump O2 and drugs into him.

Okay not so bad. I lay down to go to sleep (they have a chair with a pull out cot.) and Alex screams out again. Okay I am up. He is trying to pull stuff off and I think needs to go potty.

7:15 his Doctor (Joe David Bowers, who also happens also to go to my church.) tells me they need to put a feeding tube down Alex's nose. We give him more drugs, take a few more vitals, and now Marycke arrives... just in time to see them shoving a tube up his nose. 3 nurse and Marycke held his hands, legs and head, as the tube is inserted. Looking good, looking goods, BAM! Alex breaks the grasp of someone and yanks the tube back out.

Okay more staff is called and we go for attempt number two. Let's just say it did not work. Marycke was thankful I was not shooting video. The tube started down, there some screaming, some coughing and then lots a blood was spit across the bed and onto the doctor. Guess that says enough that they decided no to do the tube for now.

Marycke is with him now so I can come home, shower, check email and write some new posts. Then I am going back over. Grandpa was on his way up as I left. We have had several visitors and appreciate each and every one. Still, remember to call Marycke first. we are not sure what we will be doing to the boy.

Prognosis, we will be there 3-4 more days. The Dialantin and Phenobarbital are in good therapeutic ranges. However he is still have seizures that never manifest to the 'outside'. The EEG is seeing the activity. Marycke is noticing a few changes in his eye pattern. But a good Mom seems always to be able to do that.

Thanks again. Not sure when I can post again so here are some pictures and even some videos.

Neal

This video shows Alex waking up and me telling him he would have to ‘wait five’ before removing anything from his body.




This one shows a night time seizure. Pretty mild compared to the others.

Alex Hospital

Alex is currently in University Hospital (Room 1252) recovering from uncontrolled seizures. Here the EMTs transfer him in from Methodist ER. We have been there since Monday and expect to stay through Friday.

Backing up a little let me say, Alex typically becomes refractory to his medication about every 18 months. This was the case near the end of May.

So we started him on a new medicine called Felbatol. He seemed to be doing okay but the seizures began to increase from one every 7-10 days to about 2 per week. But of more concern was that Felbatol reduced his appetite and he had lost 14 pounds (He is now down to 114 lbs.) by the end of August.

So we took him off of Felbatol and started him on Lyrica. He also did not do well on that. Seizures increased to about 4-5 per week and rather than only being at night, he started having them during the day.

So while we were in the course of getting this med adjusted it became harder and harder to stop his seizures. We have a drug called Diastat we could give him at home and it would stop them. But it is a strong drug and ‘knocks him out’ for the next 24-30 hours. Well over the past two weeks Alex appears to have also built up a tolerance to Diastat.

So last week, after multiple seizures Saturday and Sunday, it became apparent Diastat was not going to work. So Monday afternoon we took him to the ER. Normally they administer Ativan and seizures stop. Not this time. Alex continued to have 70 seizures over the next 14 hours. The ER never was able to get them to stop. So we checked him into University Hospital (Room 1252) and they gave him super doses of anti seizure (AED) medications. We had gone near the point of having to possibility putting alex into a ‘chemically induced coma’. But fortunately, just after midnight Monday, Alex stopped seizing.

Now, we have been trying to wake him up for the past 2 days. No luck so far. The doctors have taken him off 3 of the five AED he was on but will not know his reaction to the change until we get him to wake up.

His veins got so beat up we had to have them put in a 'pic line' (tapping a vein below the surface of the skin). They have to draw a lot of blood as well as administer the AEDs throught this 'pot'.

Alex had to get 'mittens' put on since he kept trying to pull out his 'pic line' and remove alos kept removing his 'hat'.

And now they have decided his larnnyx is drying out. Them have had to put on a mask to add moister to this O2

So we are waiting and praying that he will adjust okay and we can come home soon. But it looks like we will be here through the weekend.

Thank you for your support and prayers.

Neal and Marycke

Seizure weekend

Not a good weekend for Alex. Saturday he had seizures. Then by the afternoon he felt well enough to eat something.

but by the afternon he had rturned to his room, gathered al lhis favorite items, and has now fallen alseep on the floor.



Then Sunday AM, seizures again. Marycke has given him Diastat but they still are not controlled. If we can not ge tthem to stop by 2 PM we will have to go the ER.





Oh good. All done for now. Let's see what tomorrow brings.





Neal

Welcome Sophie

Marycke returned from Michigan with a new puppy -Sophie! She has joined the Shaver household.

We are hoping she will become a good friend and guardian to Alex. So far they are still getting aquainted.

Sometimes she takes a break from chasing her tail, eating and sleeping to help Marycke with office work. So please forgive any invocies with paw prints.

And of course nap time is important for puppies.




From the back of the couch to sitting on the dishwasher door, Sophie has figred a way to be in the middle of the action.