Update on Lucas

Lucas is going on 2 years now since his burn, which means the kids have been home for 2 years as well. WOW, 2 years!

So we are still going through a lot with Lucas, but they are doing a new surgery on the little guy that is really just phenominal. Basically they are cutting into his scars removing a large portion (1/3 of the total scar mass this time) then reaching under his skin and pulling the subdermal layers towards the cut and stitchinng these subdermal layers into the scar. What this will do is force the real skin to grow back and take over where the scar used to be.

keeping him quiet in the car

So how does one keep a kid like Lucas quiet in a two hour car ride on the way to his surgery? GAME BOY TIME! You laugh but I wouldn’t know what to do witht hat kid if it wasn’t for the game boy and the in car DVD players…

getting dressed up

I think the only part the kid doesn’t like is losing his underwear. It’s the same thing every time, he tries to talk us into letting him keep them on, and he keeps trying to find a new way to sneek them back on. Of course that just means we have to hide them and find something new for the little guy to do.

when the lights go dim we find a new way to amuse him

On this trip one of the monitors in the prep room was on the brink, yeah even UNC has crappy computers, so they had to kill the overhead lights  in the room. This meant the game boy was out of commision and he had to move on to new adventures. his varied form sticking stickers everywhere (what nurse in their right mind gives a little boy a box of stickers and tells him to go to town?) Luckily there was also some crayons and a coloring book and we were able to divert his attention from the stickers.

the aftermath

Several hours later and we find a very different Lucas, sedated, worn out, and devoid of any energy. Sick and delirious, a pitiful sight to behold. But he was very insistant that no matter how bad he felt he still wanted to go to Golden Corral (he gets to pick where we eat lunch on his surgery days) And as normal the nurses were fighting over who got to care for him, he is just so easy to deal with the nurses all love him.

the ride out

He was also insistant that he gets to ride out of the hospital in the wheelchair. But he wasn’t so keen on the fact that we was going to be in a sling for a few weeks and have a tube with a suction bulb coming out of his arm for a few days.  This actually turned into a bit of trying to convince him for several days to keep his arm in the sling. No matter how much pain this kid is in you are not going to stop his fun.

But I am a awesome dad, and found a way to get the little guy to actually like his sling. TYE DYE!!!!!!!!!!!!!!  Yes that’s right, tye dye the sling then cover it in his choice of biker patches. He had his free reign of all my patches (I used to sell them) and he went to town making the sling his own.

stylin

and profiling

So there you go, as you see he is up to his normal self, sans one arm. And yes I had to sew the sling closed to keep him from sneaking his hand out of the holes to use his arm. But he is doing well and loving life, and he LOVES his new sling.  Also as a little added slice of pie for his joy he is going to get to a special summer camp with the UNC burn clinic this summer for burn survivors. He is totally stoked and so excited to get to go to this summer camp.

In the Hospital again

Ok, i know it’s been a while, many reasons for that, but I’m coming out of my semit retirement to have a central place to post updates on the newest saga of Lucas’ burn.

So we have had an issue in the past with a staff infection from his burn. Oral meds worked to clear it up, but it came back. Our local doc didn’t want to do anything to hurt the burn so he told us to come back down o UNC to have them look at it.

So for the next 5 days we get to sit in UNCH in isolation as he has to be quaranteened.

Of course this would be the final week of school for the kids, so Heather can’t miss school. And of course she was planning on visiting some friends up in the frozen tundra of the hellish north east next week, so the schedule in that is up in the air… of course air fair doesn’t refund squat.

His meds are doing great, and he is perfecly happy to have his own tv that he can control and watch what he wants to watch, but we’ll see if he is still that happy at the end of the week.

Lucas, Saturday update

The kid is doing great today, we are expecting a phone charger and a cable to transfer our photos today, so I should be able to update you guys with a photo, not to mention answer the phone at some later point in time.

Last night he had a toatl meltdown when they went to do a throat culture. The nurse explained what he was doing, and he started to cry, we asked what was wrong with him and he said, and I qoute, “I’m afraid he will touch my epiglotis, and if he touches my epiglotis I will DIE!!!”

It didn’t help that the nurse, mom, and myself were on the floor rolling in laughter.

We have also discovered, via Lucas, that if he is in pain, if you blow on the line (a needle stuck in your arm for 4 days at a time to put in drugs) or as he calls it, the little blue thingie, well the blowing goes in the needle and to the hurt parts of the body.

Psychoscematic therapy at it’s best, but we aren’t going to fight it.

Yes, Lucas has become somewhat of a rockstar here in the burn ward, the stream of bikers that have come in in full biker gear, the comments the kid makes, the fact that he is in a fight with his mom to bring his blue hair die in so he can die his hair in the hospital, the fact that he is just generally so happy, yeah, the nurses fight over who gets this room, they all want to play with this guy.

Yeah, if you have a non chemical, safe, blue hair gel/die send it in, Heather is just worried about the die in the gel he has at home being bad when they wash his hair  when it’s washed and the fluid goes over his burns.

 He has been working on his stand up routine, I think it’s the captive audience.

The penicilin has worked wonders on the infection, his swelling is non existant today, and was terrible yesterday. The infection is no longer visable, it was spreading yesterday. Even his shoulder looks better today than it did yesterday. Most of the burned flesh is gone, and you can see where the new flesh is started to grow good, you can also see where it’s not, and where the surgury is needed.

The doctor was ver impressed with the burns today, he was surprised to see how much they improved with only one day of penicilin for the infection.

 God has been really good in this, as bad as it is we can definately see His hand in so much,

The other day a bunch of my Bikers for Christ brothers were in to pray with Lucas, they stopped in the hall way and prayed with the family next door, this was the last interaction this family had outside of the family before she passed.

Lucas has befriended some of the other burn victim kids, they are kind of copestetic together, they push each other to do better.

Then there is the people I have met in the McDonald House, it’s a great place to stay, but there is a lot of stress there, people die, the phone calss come in, they collapse where there are, you then try to comfort as best as you can.

Even the burn itself, it’s terrible, it’s a bad burn, but his head was covered in the oil, but it wasn’t burned at all. God’s grace. We are so thankful, that with how bad it was his head was spared, protected, from how bad it very well should have been.

Update on Lucas

Lucas is doing really good, his spirits are really high and he is doing everything he is asked and then some.

Unfortunately he is going to have to have surgery next week, at this point it is scheduled for Wednesday.  They will have to move some skin from his butt to his shoulder, the skin there was a 3rd degree burn, and huge, and isn’t healing at all, it’s getting worse actually

 Our spirits are as up as can be expected, we have a room at the Mc Donald house, very nice place actually.

We have had a lot of request for an address to send cards, we will be here for at least the next 2 weeks, so here you go:

Lucas Moore – Room 5405

C/O NC Jaycee Burn Center

UNC Hospitals

101 Manning Dr

Chapel Hill, NC  27514