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.

Up early

Too early. 3:05 AM and Alex is up. Took all those naps yesterday. So I grab my pillow and push him over to his side of the bed and tell him, ‘Time to sleep.’ Then for then next 45 minutes this little hand keeps rubbing my back and signing ‘airplanes’. 4 AM, I give up. Alex and I are out to the livingroom.

We can not find his dot box, his favorite puzzle. Mom picked it up yesterday so the new puppy would not chew on the pieces. Anyway, we go back and forth from the LR to his bedroom. The whistles are jangling around his neck. I am afraid the puppy will hear us and want to get up as well.

On our own

Very good day. Alex slept through the night and got up on his own around 7:20. He immediately signed airplanes but I told him first was breakfast, then shower, then medicine and finally airplanes. He held up 5 fingers and said, “Five.”

So I could not get him to eat a normal breakfast but he did have Mac and Cheese again. Then we went off to the showers. He still needs help with every aspect. I guess he sort of can wash his own hair. But otherwise we have to wash him down. He also does not dry himself.

Before going to The ARC, we stop over by the runway and watch a few planes land. Even after all these years he use the word, ‘orange’ for any airplane. I guess it was because of all the orange Southwest planes we use to see.

Early Night for Alex

Well it is 7:40 PM and Alex has already had meds is asleep.

He had a seizure this AM, 5:33, but then got up on his own around 6 AM. He has stayed up the entire day. We had to have MAC and cheese for breakfast but he had no problem going to The ARC.

I picked him up early, stopped by the house to say hi to Grandpa, and then out to Fiesta Texas again. He was very excited about riding the train, and the horses on the carousel, and then sat and watched the airplanes. After about 20 minutes he finally said he wanted to go on the plane. But alas he was too tall.

But, while waiting, we were near the White Water log rise. He expressed an interest in going. So off we went. And again. And again. Wow he was wet but said he still wanted more. I expected to bring him home and let him get to sleep. Here we are coming down the big drop.

Then we got home and there was a water rise right in our own street! Water main brake.

Sunday Seizures

Starting out with seizures this AM. 7:50 Am and again 8:22 AM. Shortly after that I was able to get him to take his medicine. And he slept till 12:20 with no more episodes.
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.

We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.

Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!

It is hot, 100 degrees. So we come back home and have a quiet afternoon doing Legos. We go to LIFE group, for bible study and dinner, at the Laxson's where Alex played very nicely with a couple younger kids. Then we went swimming in neighbor Charlotte’s pool. Alex loves to dive under water for the rings.

Mickey D's

Starting out with seizures this AM. 7:50 Am and again 8:22 AM. Shortly after that I was able to get him to take his medicine. And he slept till 12:20 with no more episodes.
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.

We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.

Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!

Saturday with Dad

We it has been a long time but Alex and I finally spent the whole day together. He got up nice and early, 6:30 AM, and decided we should go look for airplanes. So off we went.

Of course, had to stop by Mac Donalds for a biggie breakfast. We could just eat pankcakes while watching the planes.

Then we decided to finally go get our passes for Fiesta Texas. Alex enjoys riding the train and the carousel. We stopped often and sat on a bench to watch the train come by. He also showed great interest in the roller coasters and the airplane ride. After 3 hours he was ready to come home for a rest.

But wait, he is not done yet. After a couple hours of quiet time he agrees to go swimming. He collects his diving rings, gets on his swimsuit and off we go. He loves to jump off the board, do some dead man floating, and of course dive for those rings.

New Puppy

Marycke and Megan have gotten us a new puppy - Sophie. They are up in Michigan now but are due back in San Antonio Tuesday. I keep telling Alex sheis coming and he smiles. But still says - "No."

Long Night

Hmm, 1:30 AM and Alex is out of bed. All that sleeping during the day yesterday, as a result of seizures and Diastat, and now he is wide awake. But Marycke is leaving with Megan for Michigan today and I really need some sleep. So I put Alex in bed with Marycke. Wake her up and let he know.

3:10 AM, I am in the office working on a website, and in walks Alex. Okay, back to Marycke. She apologizes for not hearing him get up. I work till 4 AM and go to bed myself. 7:00 AM, Neal, Megan and Marycke are up, time to go to the airport, and of course, Alex is snoring away.

Fortunately Dad is still in town and comes over to stay with Alex till I take the girls to the airport. Everything goes well. Marycke is seeing her parents in Ann Arbor, and rumor has it a new gold retriever puppy will be coming back. Her name is Sophia.

I am home by 8 AM and Dad says.. Alex is up. Huh? I though for sure he would be sleeping. Nope, ready for breakfast and then off to the ARC. Well breakfast was prepared but very little was eaten. Oh well guess he will have a good lunch. The video below shows a typical morning trying to get him to eat after having had seizures the day before.

At The ARC I cannot find his class. With some assistance I find it. Several folks come greet us but the aid is new... he first day. Oh boy. How will she know about Alex. He has not even gone potty yet. Lots of action in the classroom. But after finding some Legos for him to work on Alex seems okay with me leaving. I am not too sure. Seems like I never meet people at the ARC that make me feel secure that Alex will be able to communicate his wants and needs. Anyway, I am of to Alamo PC to volunteer for 4 hours. Fixing computers. Afterwards I stop by Wendy's and get a drink for Alex and some nuggets. I decide to pick him up early.

They are in the sensory room at the ARC. This is an area of the gym that has been divided off and music is booming, the folks all have things to squeeze or hold or touch that affect the senses. Alex is squeezing some theraputty he seems happy to see me. We agree to go back to the office to see Grandpa.

By 3 PM he had crawled into his bed and is fast asleep. Oh well, enough of the blogging. Need to wake him up and get him some food. Otherwise he will be up all night!

Diastat Day

Well we should have known ... It seems when Alex has a great appeptite, wants to clean his plate or keeps 'saying' yes to whatever we offer, we know later he will have seizures. Tonight is one of those nights. He has finished two helpings of Mac and Cheese, 2 Beef Sausage and wants more.

Then he wants me to take him to watch planes. Of course on the way we pass Mac Donald's and he has to have a coke. He never drinks it but I know he enjoys handing them the money so I pull through.

That night he had multiple seizures and Amarycke gives him Diastat. Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.

Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.

Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.

Day at a time

Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.

But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.

I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.
Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds

Much better

Today Alex is almost back to normal.

He slept all through the night and seemed to have a wonderful day at The ARC.

At The ARC he is part of The Young Adult Community Integration (TYACI) program provides opportunities for young adults ages 16-26 to develop life skills, receive vocational training, and participate in community activities. Classroom activities are designed to help participants maintain and build upon the vocational, social, and life skills they learned in school.

Long day

Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.

But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.

I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.

Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds.

Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.

Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.

Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.

After lunch we tried to go watch the planes and trains but his drooling was just too much. He only lasted 45 minutes. When we got home he took a nap. But 4 PM he is back signing for me to take him to the planes. Off we go.

Not too many planes but one train. He signs ‘M’ for Mac Donald’s but I ask if he would rather get sausage from Blue Cactus Café. He shakes his head yes but then refuses to eat any. Oh well, into the frig for lunch tomorrow.

Now he is helping Mom vacuum and is bringing things to me at the desk. Hope he stays up for a while so he will sleep in.