Out of the gown


Skyler's incision drain and catheter were removed this morning, and we are weaning him off of his oxygen. His crit level came up a point. If it continues to go up, he won't need anymore blood.

He is out of his hospital gown and in a T-shirt and sweats! He has met the Poop Criteria.... A Big One!! The nurse said he is checked off in that area!

We still need to learn the 2 person lift from the bed to his chair. We will do that today or tomorrow.

The OT came by to look at his left arm but Skyler was asleep when she was here. She thinks it is just from the postition he was in during the surgery and once he is up in his chair and feeling better he will use it more. Eric from the wheelchair place is coming later this afternoon to adjust Skyler's wheelchair.

I'm hoping to take Skyler on a little tour of the hospital tomorrow if he is up to it. The Hospital is starting to look very festive. They have put up decorations inside and out. Everyday there is something new.

Friday morning

Not much to report this morning. We have kind of hit a plateau with Skyler, he is still in pain, but it seems to be controlled with the meds. He is uncomfortable and a grump, but I don't blame him a bit. We are trying to get he bowels moving again, they are big on pooping here in the hospital.

He got into his wheelchair yesterday, and lasted about an hour. It is tough on him trying to support himself upright without the use of the old tone in his muscles. He is going to have to relearn a lot of control.

We have had some visitors in to see Skyler and us which helps to break up the boredom. Thanks a lot to all who have visited, and who have called, and all of you others out there keeping in touch from afar.

Chris

11-29, midday

Last night we "graduated" from the PICU to a regular room on the Ortho wing. Pretty nice place! Skyler had a better night last night. He is off of the narcotics and on some oral pain meds that seem to be working better and not making him so disorganized and agitated. He has had a busy morning today. He flew through the air via the Hoyer Lift, pretty cool, and is sitting in the recliner chair (Lazy-Boy chair).



He was not happy about sitting in it, a little worried about being out of bed and still sore. His pain meds have kicked in so now he is snoozing in the chair watching TV. We'll get him in the chair one more time today and then tomorrow have him sit in his wheelchair. Eric from Aspen Sitting will come and make any adjustments to his chair that need to be done.
We washed Skyler's hair while he was in the chair. They have a waterless hair baggie that goes over their head, and then you just scrub awhile, take it off and dry with a towel.



He looks like a new man!! He has to clean up as Dr. Joyce is on the floor today and is stopping by to say "Hi"! That just may bring a smile to his face.... not many smiles these days.
His crit is low again so he may need more blood today. We are still waiting to see the doctors.
He isn't using his left hand much, except to pull off his oxygen. We hope once he is in his wheelchair that he will try to use it more.

Dr Chang stopped by and said Skyler is ahead of the game. We'll see how he does in his chair. We have time to get more comfortable using the lift, dressing and rolling him.

OK, back in bed now after an hour in the chair and he is worn out. It's a pretty big deal when you are recovering, just to sit someplace else.



Now for a tour:




Yes, that is a 25" flat screen hanging up there... I may just move in here myself!

Update from Kathy

Good Afternoon,

Skyler and Chris had a tough night last night. The block wore off and Skyler is in a lot of pain. They changed his pain meds so hopefully that will help. He is grumpy, (YEA!) and ready to go home!! He was wondering what happened so we told him again and said it will be a while before he can go home.
We'll bring a TV with a VCR tomorrow so he can watch some of his favorite tapes. That brought a small smile to his face. Dr. Joyce may stop by today to say "Hi". That may brighten his day! :-)
He sat on the edge of the bed today. It took 4 of us to get him there but he said it felt good to sit up. Rolling from side to side is tough and painful. Big excitement....He POOPED!!! Nurses and Doctors love poop! :-) Now he is crashed out. I took a couple of pictures so Chris will get them on his blog. He is still in the PICU. I don't know if he will move to ortho floor today or not.

Thanks.
Kathy

Updates from Chris, with pictures!!

As promised, the always fashionable look of surgery scrubs:



Skyler just out of surgery, waking up in the PICU:


Sitting up for the first time today:


And finally, the bandaged up, now straight back:

Second day recovery blues

Last night into this morning were pretty tough for our man Skyler. The initial pain management, which involves a spinal block and great drugs wore off. They are giving him some other pain meds, but it doesn't do quite as good of a job.

To keep his lungs clear and avoid pneumonia, he gets lung treatments every 4 hours. Those are nasty! Breath in some yucky smelling medicine, then strap on a mask that pushes air in by force to open up air pathways. None of the kids like it, the respiratory therapist is the devil in disguise to these kids.

Thanks again everyone, you are all great friends,
Chris

Major Hardware

As opposed to Lieutenant hardware...

Pretty cool staff to work with here, I asked for XRays and they emailed them to me right away!



Kathy's update from this morning

I came home last night to take care of the house/dogs, and will be heading to the hospital shortly to tag off with Kathy so she can come home and get some rest.

Here is her update:

Good Morning!
Skyler had a pretty good night last night.
They rolled him onto his side a couple of times. The incision looks very good, I didn't look at it, just taking the nurses word for it. He did well on his lung test to get off of the vent. They just took an x ray of his lungs, so if all goes well, they will work on taking him off of the vent today.
He just woke up for a couple of minutes and is watching the news on the cool TV but is back asleep now.
The bleeding from the incision has slowed down considerably and he is peeing. YEA! His blood count is down and they may need to give him more blood but will do some more tests and see how it goes. They would prefer not to give him anymore blood so are hoping his counts come up on their own. I'll know more after the doctors do their rounds.
I was able to sleep for 1-2 hours at a time then the nurses would come and do things with Skyler. They are wonderful! Very very good and very gentle and caring with Skyler. It hit me about 2:30 this morning that we have a long stay here... OH MY! I was so focused on the surgery, that the length of the stay hadn't hit me yet. But we will get through it. I hope the nurses on the Ortho floor are as good as the ones in the PICU. I found the shower, OJ and coffee and am somewhat awake.
Chris and the dogs had a good night at home. Chris will come down later this morning and will spend the night with Skyler tonight. It will be weird to be at home without them. I haven't been home all by myself at night since Skyler's hip surgery way back in 1999!! It maybe too quiet for me! I'll miss the sound of the vent and his ice machine!
Well that is all for now. Thank you to everyone for their thoughts, prayers and visits. We are very fortunate to have such wonderful support in our lives.
Skyler is so brave and strong, we are very proud of him!
Thanks again
Kathy Chris and Skyler

Last update for the night

Skyler is sleeping well in the ICU, he stirred a little about 30 minutes ago and then fell right back asleep. That is good, it is what he needs. He will remain on the ventilator tonight into tomorrow until we see how much fluid settles in the lungs. He had quite a bit of fluids and blood transfused during the surgery, so that is a bit of a worry.

Overall, we are very happy with where things are, better than we expected with the spine, and recovery is a bit slower than we expected. But it's all good.

Goodnight all,
Chris

Can you believe he grew 2 inches?

Dr Chang just came out of the OR. Skyler did very well, he did loose a lot of blood, over 4 pints that we thought he would use. They just about replaced his entire blood supply! This is because he is on Depakene for seizures, and that has a blood thinning side effect.
He will be transfered to the ICU now for those doctors to watch over him for a couple of days. We will get to go see him in about 2 hours.

They had better results on the surgery than they expected, being able to straighten his curves almost all the way. They told us Skyler probably grew 2 inches, hard to imagine!

Thanks again everyone!
Chris

Surgery update #1

It is almost noon and Skyler has been in the OR for about 2 1/2 hours now. There is lots of prep time in this surgery, positioning of his body in just the right way, and attaching electrods to places all over his body. The electrods are used to monitor him for any problems in the spine while they are operating so close to the spina column. They provide feedback that lets them know if they have intruded in any way into the nerve pathways.

I got to take him back into the OR, all dressed up in my gown looking just FAB! He was a brave guy, getting just a little weepy as he went into the room. The anethstesiaologist (gas passer) was a great guy that gave him a pre-med so he calmed right down, even giggling a bit as they knocked him out for the operation.

Two updates later from the nurses and he is doing very well. We should be finished sometim around 3 oclock or so.

Will let you all know when I have more news, thanks everyone for the good vibes!

Chris

Skylers Spine Surgery

Hi Folks, Skyler's dad Chris here to let you know a little bit about Skyler's back surgery. He is going into the hospital Monday morning the 26th for a procedure to straighten out the big "S" curve that is in his back. The curve in his back is the result of him having Cerebral Palsy, and his brain firing the wrong muscle groups to let him move his arms and legs. Skyler "fixes" his back and legs to help him be able to move his left arm and hand. Over the years this has pulled him into a poor position in his wheelchair, and even though he has a great support system in his chair, he is just too strong.

Here is his X-Ray:



The screws that you see down in his hip are from a previous surgery to repair his hips coming out of the sockets, which is also quite common for kids with CP who grow up in wheelchairs.

Skyler's procedure will be called a Posterior Approach where they go through his back only. This is good because going through the front (Anterior approach) involves more risk.
Here is a link that shows some information.

We will be updating this blog over the days that Skyler is in the hospital to try and keep everyone up to speed. Thanks to all of you who have already sent their prayers, well wishes, and good thoughts!

Ketones and Autism Part 4 � Inflammation, Activated Microglia, CtBP, the NLRP3 Inflammasome and IL-1�

This series of posts on ketones and the ketogenic diet (KD) is nearly finished and I am glad that I made favourable comments about the KD ea...