My son's need for healing severe burns

[Guerrero2915]

Thanks and I did pm you....

He got bumped into at the end of school today and tore his donor site a little bit...hurt like heck I guess and he just called asking to come home... so I am off...he made it through the day though! I am so proud of him...even if he is there at all...he handles it so much better than I would...

OUCH!!! It is good to hear that he made it through the day,Kids amaze me sometimes with the strength and resillence. And you are pretty strong yourself seeing our children in pain is alot to handle, not sure how I would do it if were one of mine. God Bless your strength.

I PMed you with my info.

 

[Dizneydawn]

Hi guys..Baylor is going back to burn unit today...getting cast off and I will see the results of the graph for the first time...

Not sure what next steps are but will post...

Has anyone had kids who have been having night terrors before? The past 2 nights Baylor is waking up...not really...sobbing so hard he cannot breathe...and it is scary...going to talk to docs today - but wanted advice if you had any...

THANK YOU SO MUCH....to all that have sent postcards and packages for Baylor..he has his map out to make sure he knows where Texas is, Vegas, Maryland, Delaware, Florida and Illinois too...I may be forgetting someone...I will add if I did...

Anyway - will be back soon to let you know how he did ....

 

[A Mickeyfan]

I hope all went well at the doc's! I just want to add that I too feel your family needs to keep your Disney trip... your son needs to have something happy and fun. The trip would be a good thing for him

 

[Dizneydawn]

I hope all went well at the doc's! I just want to add that I too feel your family needs to keep your Disney trip... your son needs to have something happy and fun. The trip would be a good thing for him

Thanks for the support...I am getting excited to leave...so is he...

So Baylor's graph site looked alittle caggey right now but the docs were thrilled and said it looked like it was from a month out post op...not 2 weeks so that is great...but it was purpley and very thin looing still..but the top og hi sleg looked great where the burn was not bad...from mid to his ankle was the worst...and they did graph the ankle...he has a walking cast on now..thinner than the last one...and next Tuesday will hopefully get a compression stocking on that he will have for the next 18 months to hold the graft and new skin buds down so it heals flat...that will come off and he can bathe but must be worn 99% of the time...

He is walking well on it though and can have more flexibility than we expected this soon so I am pretty happy for him...

Thanks again for all the support from so many of you...

 

[kpadalik]

Hi guys..Baylor is going back to burn unit today...getting cast off and I will see the results of the graph for the first time...

Not sure what next steps are but will post...

Has anyone had kids who have been having night terrors before? The past 2 nights Baylor is waking up...not really...sobbing so hard he cannot breathe...and it is scary...going to talk to docs today - but wanted advice if you had any...

:

First let me say that I have been following your journey and your son's recovery and you are in my prayers. To have a child go through something like that must be awful and reminds us all to never take life for granted. You are a brave woman and your son has an amazing strength for all to be admired.

As far as the night terrors go, my DD (almost 6) has had night terrors before, although only a few. I'm not really sure what is recommended to get your child through the terror, but with my DD, I hold her and talk very softly while rocking her. Usually only a couple of minutes of reassurance calms her down and she drifts back to sleep. She never wakes up during these episodes and has no recollection of them. However, I would be almost positive that Baylor's night terrors are due to post traumatic stress disorder and definitely need to be discussed w/ a doctor.

Good luck to you and a speedy recovery for Baylor!

Kristin

 

[Mommaof3]

Just wanted to check in to keep up with Baylor's progress. I really hope your trip comes off as planned. It seems it would give him something to look forward to and help keep his mind busy. My mother wears a compression sleeve. She doesn't mind it at all. (not for a burn--different condition) It does attract some attention, but not lots. She has had it for about 8 years and we all forget about it now. I hope Baylor continues to heal both physically and spiritually. I also hope that your family has a nice Thanksgiving.
Melissa

 

[Guerrero2915]

Just wanted to say I am glad he is progressing so quickly. Know that you are still in my prayers. Sorry i did not thatcard out today, (we had a leak at the house about 2 wks ago, and today there was water everywhere again) I will get it out ASAP though. God Bless.

 

[A Mickeyfan]

When exactly is your trip to Disney? If it is during any of my long weekend, I might be able to pop up and say hi I have a 16 yr DD that I can bring up and maybe she can hang out with your DS for a bit. We let our Disney pass expire but we can meet up for lunch or something... We currently only have Universal passes... so if you have plans on doing the parks there too... we can go there with ya...

You should try to plan a mini meet for all that may want to meet your son. He really is a trooper to endure what he has gone thru. It might bring up his spirits too, knowing that so many people care about him... people that do not even know him.

 

[Dizneydawn]

First let me say that I have been following your journey and your son's recovery and you are in my prayers. To have a child go through something like that must be awful and reminds us all to never take life for granted. You are a brave woman and your son has an amazing strength for all to be admired.

As far as the night terrors go, my DD (almost 6) has had night terrors before, although only a few. I'm not really sure what is recommended to get your child through the terror, but with my DD, I hold her and talk very softly while rocking her. Usually only a couple of minutes of reassurance calms her down and she drifts back to sleep. She never wakes up during these episodes and has no recollection of them. However, I would be almost positive that Baylor's night terrors are due to post traumatic stress disorder and definitely need to be discussed w/ a doctor.

Good luck to you and a speedy recovery for Baylor!

Kristin

Hi...we are seeing a doctor next week if it does not go away...they think his medicine weaning may play a role because he is now able to not only feel but remember more...he remembers waking up and crying and cannot catch his breath because he is sobbing so hard and begins to crawl around in his bed like he is experiencing anxiety...

Thank you for the well wishes

Just wanted to check in to keep up with Baylor's progress. I really hope your trip comes off as planned. It seems it would give him something to look forward to and help keep his mind busy. My mother wears a compression sleeve. She doesn't mind it at all. (not for a burn--different condition) It does attract some attention, but not lots. She has had it for about 8 years and we all forget about it now. I hope Baylor continues to heal both physically and spiritually. I also hope that your family has a nice Thanksgiving.
Melissa

We are going for sure but it may be a difference in some of the hotel stays - may stay off property a bit cheaper ...And I am glad we are going as well...he really needs this as does the whole family..this is the most stressfull events I have ever gone through..I can be in the hospital all day long but seeing the way this has affected his self -esteem has hurt me to the core...he is frusterated at his life reight now but truthfully...so aware of those still battling a bigger fight...when we went to the doctor on Thursday...he wanted to look back at the burn unit...visited some ogf his nurses...saw the man still there from Sioux Falls...he was sleeping so Baylor decided next Tuesday he wanted to bring him something to help him try and keep awake...he thought a movie from our home (they have tons of movies but when you are there for months...new videos are a nice change ...so we are going through our videos and bringing ones we are done with...

Just wanted to say I am glad he is progressing so quickly. Know that you are still in my prayers. Sorry i did not thatcard out today, (we had a leak at the house about 2 wks ago, and today there was water everywhere again) I will get it out ASAP though. God Bless.

Thanks and please yes still mail out a postcard to him..he loves looking forward to the mail system!

When exactly is your trip to Disney? If it is during any of my long weekend, I might be able to pop up and say hi I have a 16 yr DD that I can bring up and maybe she can hang out with your DS for a bit. We let our Disney pass expire but we can meet up for lunch or something... We currently only have Universal passes... so if you have plans on doing the parks there too... we can go there with ya...

You should try to plan a mini meet for all that may want to meet your son. He really is a trooper to endure what he has gone thru. It might bring up his spirits too, knowing that so many people care about him... people that do not even know him.

Thanks for that idea...we have Saturday the 13th open pretty much and will love to say hi to people whenever they may have the chance...we will be oing to Universal for my older son's B-day on the 14th...read my PTR...and you will see pics of the whole gang...DS 17 1/2...DD 15 too....and on the last 2 pages there is a new itenerary schedule...actually I think on the top of the last page...

Link is in my siggie....

 

[twinklebug]

HI - Thinking of Baylor's night terrors... My son's close enough to your son's age that I understand they're still "little" on the inside even though they push each other to grow up.

It may sound silly, and there's no need for any of his friends to know, but does he have a favorite toy, stuffed animal or even a blanket (again, I said it would sound silly LOL) that he'd feel safer with at night? My son was having sleep-walking nightmares every night after his father abandoned the family. The only thing that seemed to calm him down was keeping the light on at night, a light saber beside his bed & holding onto a few friends. I allowed him whatever he needed to make the transition and show him everything's fine I'm not worried about long-term effect of him sleeping with such aids, he'll outgrow it eventually and we're down to a night light now.

 

[Dizneydawn]

HI - Thinking of Baylor's night terrors... My son's close enough to your son's age that I understand they're still "little" on the inside even though they push each other to grow up.

It may sound silly, and there's no need for any of his friends to know, but does he have a favorite toy, stuffed animal or even a blanket (again, I said it would sound silly LOL) that he'd feel safer with at night? My son was having sleep-walking nightmares every night after his father abandoned the family. The only thing that seemed to calm him down was keeping the light on at night, a light saber beside his bed & holding onto a few friends. I allowed him whatever he needed to make the transition and show him everything's fine I'm not worried about long-term effect of him sleeping with such aids, he'll outgrow it eventually and we're down to a night light now.

Already with you on that...I had his siblings bringhis 2 'Blankets" in the hospital...they actually came in wearing them like super capes! He did use them inthe hospital but since we got back he has not used them again...in fact at the hospital they gave him a blanket that people make for patients in the burn unit because they are there for so long...it was flannel with motorcross on it and smaller...like a lap blanket...

I need to dig them out...I am washing his sheets right now as we speak...and just put them back on his bed.

Thanks for the reminder...

How is your son doing now?

 

[twinklebug]

Already with you on that...I had his siblings bringhis 2 'Blankets" in the hospital...they actually came in wearing them like super capes! He did use them inthe hospital but since we got back he has not used them again...in fact at the hospital they gave him a blanket that people make for patients in the burn unit because they are there for so long...it was flannel with motorcross on it and smaller...like a lap blanket...

I need to dig them out...I am washing his sheets right now as we speak...and just put them back on his bed.

Thanks for the reminder...

How is your son doing now?

Alex is doing much better (thanks!) - he still needs his "sleeping buddies" but He's not wandering into my room at night (or slunking down in a random corner) crying yet sleeping at the same time. I'm sure it was the feeling of loss of control and the built-in safety children just assume is there in life that did it. Now his father is back around a few hours every other sunday with promises of dogs, horses, trips to europe (none of which will happen) and already asking to keep the kids overnight at his girlfriend's house where he's living. It's been 2 years, but after what he did to the kids, Oh heck no Things are settled down into a routine and I won't have them upset.

Did you find the blankets yet?

 

[momrek06]

Dawn: Wow, sounds like Baylor is doing well and receiving nothing short of EXCELLENT care between the hospital and now home.

Are the night terrors subsiding at all? That must be so upsetting for all of you to see this now. This poor child has had to endure allot and now these night terrors....

Keep us updated, Dawn!!!

 

[A Mickeyfan]

Thanks for that idea...we have Saturday the 13th open pretty much and will love to say hi to people whenever they may have the chance...we will be oing to Universal for my older son's B-day on the 14th...read my PTR...and you will see pics of the whole gang...DS 17 1/2...DD 15 too....and on the last 2 pages there is a new itenerary schedule...actually I think on the top of the last page...

Link is in my siggie....

Not sure what I can swing that weekend, if anything, it would only be up for one day, Saturday the 13th. I will see what I can do. I was hoping that you were coming closer to Christmas break. My DD cannot miss anymore school this semester since she missed 5 days when my mom died last month. I could try to drive up on a Friday night, have Saturday there, then head home on Sunday.. gotta see.

I read your link, you have your plate full.. and that is what you guys need. Lots of fun for all to have.. and good memories to replace the recent (bad) ones..

 

[sanilacjack]

Wow!
Just read your entire thread. MY thoughts and prayers go out to Baylor and your family. It's amazing how you don't realize how strong you are as a mother until something like this happens.

We will arrive at the world this Thursday. I would be happy to send baylor a post card from Mickey with a "See ya real Soon" attached to it.

Kim

 

[Dizneydawn]

Baylor went to school today with no crutches...he is walking so well I busted out bawling this morning...so happy!

Back to the burn unit today to see his graph site and see what they wil be doing form here on out...

The insurance agent is driving dow 4 hours to see us afterwords..he has called several times in the past 2 weeks to see how he is doing...saying they are acknowlidiging fault and want to make sure he is getting better...makes me a bit leary though...usually that is not how these situations work...will let you know...

 

[Dizneydawn]

Not sure what I can swing that weekend, if anything, it would only be up for one day, Saturday the 13th. I will see what I can do. I was hoping that you were coming closer to Christmas break. My DD cannot miss anymore school this semester since she missed 5 days when my mom died last month. I could try to drive up on a Friday night, have Saturday there, then head home on Sunday.. gotta see.

I read your link, you have your plate full.. and that is what you guys need. Lots of fun for all to have.. and good memories to replace the recent (bad) ones..

Let me know - I will PM you my cell #

Wow!
Just read your entire thread. MY thoughts and prayers go out to Baylor and your family. It's amazing how you don't realize how strong you are as a mother until something like this happens.

We will arrive at the world this Thursday. I would be happy to send baylor a post card from Mickey with a "See ya real Soon" attached to it.

Kim

I pm'd you my address...thanks for the well wishes...


I don't think I am as strong as I thought..my hair is falling out huge and I actually am seeing a specialist today about that situation...maybe I am internalizing all this crud...ugh

 

[momrek06]

Baylor went to school today with no crutches...he is walking so well I busted out bawling this morning...so happy!

Back to the burn unit today to see his graph site and see what they wil be doing form here on out...

The insurance agent is driving dow 4 hours to see us afterwords..he has called several times in the past 2 weeks to see how he is doing...saying they are acknowlidiging fault and want to make sure he is getting better...makes me a bit leary though...usually that is not how these situations work...will let you know...

YEAH BAYLOR!!!!!!!!!!!!!!!!

I am so sure he will have an awesome day. Everyone has missed him for sure!!!!

 

[Dizneydawn]

hi all...

Baylor had his appointment and we have some good news some not so great news...

Bad news first - his graph site did not take on the front of his shin where the worst of the burn had happened...a size about the same as a 50 cent piece or so...

We will wait and have an appointment on the 18th of December to see if it will fill in on it's own...or if they will need to re-graph that area...

next - I am glad to report the rest of the site looked amazing and that they are hoping it will keep on course and he can rsume somewhat of a normal life after Christmas if no grafting is needed again...

The insurance agent was very nice - he is not one bit happy with his clients...said they were 100% responsible for this because they left kids home alone...on top of the fact I foud out that she had been drinking the night before when they had had a bon fire "with her supervision"... in the front of the house and told the boys they could start it on their own...

Then the thing that fried me the most...is that she lied to the agent...told him all 3 boys were throwing gas on the fire...and that I knew that she was not going to be home...

Not cool and a freakin lie...the adjuster even said she contradicted what the fire marshall's report said...

They are going to try and get a small settlement for us to help with my missed work...hopefully will have in December sometime...if it is approved...which is not mandatory for the to do and according to him(Unorthodox) so we shall see what happens...

Getting some stuff packed tonight for the trip so we can see how much we have and finalize minor things...Baylor needs to get special tennis shoes...so hopefully can find them this weekend that do not rub on his graft site...

Ugh...

 

[momrek06]

The insurance agent was very nice - he is not one bit happy with his clients...said they were 100% responsible for this because they left kids home alone...on top of the fact I foud out that she had been drinking the night before when they had had a bon fire "with her supervision"... in the front of the house and told the boys they could start it on their own...

Then the thing that fried me the most...is that she lied to the agent...told him all 3 boys were throwing gas on the fire...and that I knew that she was not going to be home...

Not cool and a freakin lie...the adjuster even said she contradicted what the fire marshall's report said...

They are going to try and get a small settlement for us to help with my missed work...hopefully will have in December sometime...if it is approved...which is not mandatory for the to do and according to him(Unorthodox) so we shall see what happens...

WOW, now this is sad.... So on top of everything Baylor and your family has been through with this accident....to find out all this today....

At the same time Dawn, you have so much to be thankful for this Thanksgiving and that your Baylor will ultimately be fine.....and to think what could have happened.