Kathy's Update cause hers are so much better than mine!

Happy New Year!

We hope everyone had a wonderful Holiday season, a fun and safe New Year's!

Skyler is doing well these days. Everyday he is getting stronger and more back to his normal self. A couple of days he has been able to stay in his chair for up to 5 hours at a time. He lies down for about an hour and right back in his chair and back to controlling things! He woke up the other morning at 5am (Oh Joy!) laughing and giggling about a New Idea he had!! As soon as he was in his chair, he was telling us the script/scene for his next videotaping extravaganza! Since that fateful morning, he has made 2 new DVDs of coordinating things on one of his video tapes (usually news shows or home movies) with one of his computer games. They are called "Same Time" and "Same Time 2". He thinks they are GREAT!! (We video tape the scenes he wants, then he and Chris burn it onto a DVD. Quite the project!)

Skyler's appetite is a little better. There were a couple of rough weeks with the eating. He just didn't want to eat. He said it hurt his throat, would take 2 bites of things and then just stop. I think he has lost about 10 of the 15 pounds he had to gain for the surgery. The last couple of days have been a little better. He is eating more and asking for stuff to eat. Some days he is almost back to normal, some days he is only about 60-70% there. He is still coughing quite a bit. I took him to the ENT about his cough before Christmas, and he ordered a swallow study to see what is going on with Skyler's throat. We are waiting to get that scheduled. Skyler has a lot of gunk in his throat. It's hard for him to swallow it, cough it out and it is too deep to be suctioned. (Sorry if that was too graphic or too much information) We are going to have Skyler work with a speech therapist who specializes in feeding issues and get some ideas on what to try. We were hoping the surgery would help with his coughing, but it hasn't so far. He still has a cervical curve and the rest of his body
is straight. Maybe with time things will figure out the new alignment and start
working better. So far no one in the medical profession has any answers for us.
One thing the surgery did fix, was his constipation problem!! I guess things like to be straight and not all squished together. He likes to tell us,"You are out of poop!"
Cute! :-) I guess his use of "I" in the other sentence was drug induced!


Skyler is still having trouble sleeping. He needs to be turned about every 2-3 hours. It is getting a little better. A couple of nights he made it about 4 1/2 hours without needing to be turned!! A couple of nights, I thought he slept well, but Chris told me that I Was The One That Slept Well!!! So much for "Mother's Ears"! :-) Sleep... A full night of Sleep... What is THAT anyway??? And is it really necessary????

We have Mastered The Shower!! The first few showers, Chris, myself and the bathroom floor got more water and soap on us then Skyler did! But we figured it out. He stays in his sling and we roll the whole lift into the shower and it works quite well. However, it is a little cumbersome getting the whole rig into the shower, we now realize we need to remodel his bathroom making it a lot bigger. Time to look into all of that...

Skyler will go back to school on January 9th. He will go 1/2 days for the first week
or so and see how he does after that. I think he will be just about ready to go back. It will be good for all of us to get back to a regular schedule. The first day we'll show the aides how to use the lift to transfer him and how to move him.
So, there you have it.
In a nutshell, Skyler is making very good progress. The visiting nurse was
amazed at how little pain medication Skyler has needed lately. She also commented on how Strong-Willed he is (she was here when Skyler and I were having a "Let's Make A Deal" session on what he could and could not do) she certainly got that right!!! And to be honest with you, I wouldn't want him any other way! Whatever you do, Don't tell Skyler!
Just remind me I said that next time he and I are butting heads!! :-)
Have a great day and the Very Best in the New Year!!
Kathy

Sorry I haven't posted in awhile

Things have been kind of staying the same around here. Skyler continues to spend just a little time in his chair and more time laying down. It will take a long time until he is back to handling a full day sitting up!

It occurred to me that I have pictures of about everything except Skylers temporary hospital bed, which we have squeezed into his room. The reason we need this is because we need to be able to raise him up and down to attach him to the sling and lift. Also, the Hoyer lift can't go under his regular bed because it is a wooden frame with drawers on the bottom, with no room for the legs of the lift to roll under.

So it is tight in his room!

The laugh is back!

I really haven't had much to report these last days with Skyler. We have a routine going now that seems to work, spending as much time as he can tolerate in his wheelchair, then moving to his bed in the living room. So it is back and forth, and get out for an errand every now and then so he can get some fresh air.

He is enjoying himself more, and laughing at his DVDs that he has put together. His latest thing is to watch something on TV at the same time that he has a computer game running. We wheeled his old ancient Mac into the living room for him because it runs a very old bowling game he loves. The sound effects are funny, the bowlers all have lines like "Oooo, tough split", "Those gutters getting too wide for you?", and "Shake it off, shake it off." Silly stuff but he really enjoys it! So it's good to see that laugh back, now if would just sleep... Zzzzzzzz...

Rollin rollin rollin...

Everything we do with Skyler now involves rolling him from side to side. No more picking him up under the arms, or just lifting his pelvis to change him or put on clothes. I'll tell you, this is going to get old fast! He is being a pretty good guy about it all but he is still that same old impatient dude that wants what he wants and now.

We picked up a cot and a different mattress to have him lay on in the living room that the lift can fit under. So we don't have to pick him up the wrong way or risk a drop to get him from his chair onto the floor.



This week was very, very long... I hope he gets to feeling better soon. Mama and Pop need a nights sleep.

That's not a scar...

In my best Crocodile Dundee voice:

Now that's a scar!

Skyler got the outside dressing off from the surgery site today. Now they just let the butterfly strips fall off as they will. The cut actually goes about 3-4 inches farther down.

Home life

Skyler is doing pretty well, having a bit of pain and spasms but we can control that with pain meds and Valium. This biggest issue we have is with moving him and making sure he is comfortable. He can handle about an hour in his wheelchair and hen wants to get out and be on the floor to stretch out. So this means a lot of coordination and lifts, which means we both need to be here most of the time to handle him!

So we are lucky that I can work from home, and I have a lot of really good people and an understanding boss I work with.

Here is Skyler getting transfered in the Hoyer lift:




Here is is chilling on the floor watching a DVD:



His G-Tube continues to leak so we are heading back to the doc today to have them look at that. It probably needs to be replaced, but that isn't much of a deal.

Sunday Afternoon

Update from Kathy:

So, I'm wondering... is it midnight yet?!?!?
It has been a long day of figuring things out for us. Skyler had a pretty good night last night. He was awake early wondering where his 20" flat screen TV with CNN Headline News was???

Skyler got up wanting to do all of his usual Sunday activities and was very frustrated because he just didn't feel well enough to do them and the control on his arm was still weak. He is a little disappointed with Chris and I and how long it takes us to transfer him and get him set up. Mr. Patience! NOT!!! We are getting better at it. I think we will rent a reclining wheelchair so Skyler can lay back and relax without going to his room. He wanted us to roll the hospital bed out to the family room every day for him... Uh, No. He has been in his chair a lot today, and, Drum Roll Please...
He is using his left hand to run the DVD/VCR with his DynaVox!! Ahh... Big Sigh of Relief. We had to raise his talker up because he is taller now and he isn't able to bend his head down as much as he used to. He is a determined little, Big guy.

We were able to get an order of Valium for his leg spasms. A few calls to the Silly (Damn) Resident finally worked. Skyler is having a little trouble with his g-tube and we are waiting to hear from the g-tube nurse about that. We may have to make a trip to Children's to get if fixed. We asked for her to come see Skyler while he was there, but she never made it. What's up with that?!?!?

We were hoping for a nap today, but so far no such luck. Skyler hasn't even dozed off, even on his pain meds. He spent most of his day in the hospital sleeping.

That is the news from The Hull Household. Thanks to everyone for your support.
Don't worry, I won't send out a daily update, only if something really exciting happens! :-)

Kathy

We are home!

Skyler came home late Saturday evening! He cleared all of the requirements for coming home, so out the door we went! Skyler was ready to be home. He had been very moany, groany all day until the nurse said that he was free to go. Kathy and I were cleared on the 2 person lift and the rest of his care.

It was little bit of a fire drill getting out of there, it always seems to be that way when we check out of the hospital. They called in pills for his pain meds instead of liquid to King Soopers pharmacy. Stupid Resident... The pharmacist was great at KS. I called the hospital for a new prescription and she stayed 10 minutes late so we could pick it up.

Skyler is tucked into bed. He was very, very tired. He came home and tried to do all the things he usually does but was too tired to do it. He is using his left arm better, but his fingers are still weak. He is frustrated with it but we will keep working on it and hopefully it will get better in the next few days.

The week has been a whirlwind. Monday seems like a year ago, I barely remember it. Sometimes I feel like they rushed us out but I guess they went with Skyler's progress. The new hospital is beautiful, family friendly, and very comfortable. The nurses and doctors were wonderful. They all did an outstanding job with Skyler, and preparing us for the return home.

Skyler did a remarkable job through the surgery and his immediate recovery. He has a long recovery, with many frustrating times ahead of him, but I know he will do well. He is very brave and strong, with a lot of stubbornness in him also!

Thanks to everyone for your support, positive thoughts, energy and prayers. Please keep Skyler in your thoughts and prayers.

We'll keep you posted on the upcoming adventures at home!

Before we left the hospital, Kathy went outside to try and see where our room was. She called and told me to wave out the window, but to do that I had to crawl up into it.

Saturday through midday

Skyler is more than ready to go home!! He has been a little crabby this morning... even with Holiday Singers outside his room! Don't even try to make me happy!!!



We washed his hair with shampoo in his bed with a couple of towels and a plastic trash bag. It worked well.



He is in his chair and he used his left hand a little to run his DVD!! YEA! Made my day!! He is still very weak and not as motivated as usual. But it is a step in the right direction. He moved his legs today also. That is the first time he has moved them since the surgery. He is making progress today because he is really DONE with being in the hospital!!


He is off of oxygen right now. He needs it when he has had his pain meds and at night. We will work on that today and hopefully go home without oxygen. The Pulse-Ox below rules our life right now. 92 on the left is his O2 level (90-100 is where he needs to be) . 118 on the right is his pulse rate.



We have been cleared to go home by the ortho department. I think if we learn the 2 person lift, bathing and dressing instructions we will go home tomorrow. Skyler is pretty miserable and upset I think he will be better at home. Let's hope!

We went down stairs to cruise around and see the decorations. Skyler saw the front door and was ready to make a run for it!!! :-)





I hope everyone is having a great Saturday.
Kathy and Chris

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!