C again

I have a little downtime right now so I thought I would post now. Marv and Kendall are here now and Tate will be coming up with Grandma and Doddie Monie later this evening.



C had surgery on wednesday and I wanted to post last nite but I was exhausted. I am so glad I opted for sleep. C slept from 10ish last nite until 4am when they had to do his irrigations and take vitals. I looked at the clock and about freaked out. I figured it was around 1am. Wednesday nite I saw every 15 minutes until 5am. (it was like having a colicky newborn) We both fell back asleep and slept until around 7:30. I was so glad for the zzz's, they were much needed for both C and I. C's swelling has gone down tremendously. He still has fat feet and the left side of face is still a little thick but he can at least see out of his left eye. Doc was in to see him this forenoon and said that he looks well and did a quick assessment. Tomorrow morning Doc will have C's bandages removed and look at the healing and then have him re-bandaged. It will be the first time for a bandage change since surgery. We are earnestly praying that the grafts are taking and that there will be no more surgeries. Our day nurse said that C has been healing far beyond any of their expectations the whole time he's been here. We give God all the honor and glory for that and Thank you all for your prayers. We were talking with her about getting out of here in a few weeks and she said 'you cant leave we like you guys too much'. While that makes me feel good, I'm not spending a moment here longer than we have to.

C is on a full diet, he can have whatever he wants. I cant seem to interest him with anything except juice boxes. Its a start I guess. He's still on a full tube feed so until they back it off, he'll be feeling full. So we will wait on that part. On monday C will start PT and OT again! Pray that he wont fight the techs or get so angry. I got a slight peek into the future of PT and OT once we leave here. The way it sounds we will be coming up here for 5 days a week for 7 hours a day, for at least a month or so. Which that also depends on how well C does. You ask why not do therapy around home? We havent found anyone with extensive training in burn patients. Burn patient therapy is different than if someone broke thier leg. If anyone has a reliable, fuel saving, inexpensive car that we may be able to buy or borrow for our many trips up here, please let us know. It doesnt have to look good by any means! :) I'll know in a few weeks more details.

Another weekend is here and I would love nothing more than to take the boys bowling or go see a movie. I would also love to get back to playing cards with family, munching on pepsi and pretzels. :) (yes that is as exciting as our lives were before the accident).....soon and very soon we will be having bbq's and long summer nites chasing fireflies.........
Amy

so sorry about the two-tone post, my computer is being stupid and sometimes I want to throw it out a window (sorry Jo). It auto saves every 3 minutes or so and I dont know what happens and it doesnt show different on my screen until I post....sorry if you need glasses after reading the blog :)

Third surgery

So today C had his third surgery, and hopefully the last one. They called us up to the OR around 7ish and C went back for surgery around 8. Doc said it should be about 3 hours, but as time was nearing the end a nurse came out and said Doc needs another hour. So we waited longer. Doc came out then and said everything went good and he had to take skin from C's head, lower back, and calves. Now we pray fervently that all the grafts take and heal nicely so that we wont have to go back in to redo anything. Usually in the better part of a week Doc will be able to tell if he's going to need to touch up anything. After that then we can start thinking about moving forward with eliminating tubes and wires and maybe start weaning meds and C's feeding tube.

This morning I felt at peace with this surgery and had a good feeling everything was going to go well. Marv prayed for C and we left him the Doc's care. It wasnt until I went back in to see him in the recovery room that it hit me. I felt helpless to do anything for C and his face was swollen tremendously. I lifted his covers to touch his hand and they were both blue and cold. It reminded me of death. His feet were also swollen and lite blue. I would've given both legs and arms to trade places with him right then.(as I have wanted to many times already) He was freezing and they kept alternating warm blankets on him. When we were back in C's room they put a bear hugger on him and that warmed him up nicely. His little piggies are still cold but his fingers are turning pink again. I am anticipating a long nite ahead, thats why I've decided to post a little earlier. C has been off his feeding tube since 6 am and they can start that back up at 8pm. He told me that he's thirsty and wants a yellow gatorade, and chocolate pudding. I hurt my heart to tell him the only thing he's allowed is water or sprite. Hopefully by tomorrow morning he may be allowed the chocolate pudding. We will have to see.

Thank you to all who were praying today. Your prayers will be appreciated during the next few weeks as C starts a more intense PT regimine. I have had a few talks with him about being polite to the PT techs. We will see whether or not he was listening. Enjoy the rest of your week!
Amy

Questions??????

So I had more than 10 tallies in my funny tab, so I guess I'll do the question and answer. To be honest I am a little nervous. I'm not sure why. If you have a question you can email me at woodlandmasonry@yahoo.com. In the subject area type the word 'question' so that I know not to erase it and I'll be sure to tell Marv as well. (He has a habit of erasing important emails). Ok.

Not much to post today. Our day here was pretty uneventful besides C needing a suppository. He told me 15 minutes later that he had to go and we quickly put him on the port-a-potty. He hadnt gone for 4 days, so the poor guy had a load and I could tell he felt much better after. He sat on the chair all by himself. If only the PT's could have seen him then. When he was finished he said 'Mommy can I open a present now'. Melts my heart, how was I gonna tell him no after that!

PT was in again this forenoon. They had him sitting on the edge of the bed for 12 minutes and then standing for about 5, then he had to walk to the chair. He didnt scream as much this time as he's done in the past. In other words we didnt need ear plugs today! :) C's surgery is scheduled for 7:30 am. I need to have a word with Doc about this having surgery before the rooster crows business! I am not a morning person....ask Marv he'll vouch for me on that one (unless it's to go shopping, buts thats a horse of a different color)! I am anxious and excited for this to be over. This waiting since last thurs had been tiring. I want tomorrow forenoon to be over and I want to know for sure we wont be having more surgeries. I'll just have to wait and be patient, whats a few more hours anyway. In the span of a lifetime whats a few more weeks. These hospital walls have a way of making me forget what 'normal' used to look like in our life. I guess the Lord has ways of preparing me for how my new 'normal' will be. A friend told me thats its ok to grieve the way our life was before the accident. She's an awesome person and I value her advice tremendously! I call her my angel because the Lord always gives her the right things to say during our late nite texts. Thanks K!

I feel like I'm rambling on and I should be catching some zzz's. I will try to post tomorrow night as to the result of the surgery. Thanks for reading........
Amy

Christmas in April

C's room is overflowing with colorful gift bags, boxes, cards and the like! It looks like Santa was just here! Our church Grace Mennonite has been so gracious to us and so caring! We love you all so very much! They put together a get well box for C and put in some gifts for Tate and Kendall. Our small group dropped the box off last nite. Tate and Kendall have their stash at home and are allowed to open 2 gifts per day. C is allowed 2 also. We are making an exception though if he doesnt yell at that PT techs then he gets 1 more! :) Today the twins preschool teacher dropped off several more baskets and boxes filled with bags and presents for C and the boys. I find myself excited to see whats in each bag and box. (I love Christmas and birthdays!) So I will wait patiently till tomorrow! :) Thank you Bright Beginnings Preschool and Mrs Rennie for your thoughtfullness!!!

On Satudays the nurse on call has to collect C's urine for a 24 hour period and put it on ice so that the lab can analyze it and make sure that C is breaking down nutrients from his feeding tube. They also look to make sure he's not losing white blood cells and among other things. Thats was all fine and good by me, until this past saturday forenoon the tub techs were instructed to take his catheter out. I was like ok, how are you getting his pee now? The nurse said that I have to have him pee in a little bottle and tell the nurse right away so she can ice it down. (I'm still annoyed.....a little) C has been on a catheter since day 1, how do they expect a 5 yr old to automatically switch gears after being told to just let it fly. Not to mention the fact he had a tract infection! (I've had several tract infections and they are no walk in the park) I feel a little hot under my collar right now....deep breath ...ok. So about 4 hours later after asking C 110 times if he had to pee the nurse looked in his diaper and it was soaked. There goes all that effort. They then were gonna put the catheter back in during sundays tubbing. I am so glad they didnt. So we are one more tube free and closer to going home.

If you think of C during your morning coffee or commute to work please pray for him as thats around the time he has PT. The more they stretch everything now the more his muscle memory will come back and the quicker his release. It figures too that its the thing C hates the most! Some of its pain but a lot of its stubborness as well. On wednesday at noon C is scheduled for surgery, unless the Doc would happen to change something yet. I am excited and yet apprehensive. Marv has to work so I dont think he'll be here unless his schedule changes. Anyway I'm borrowing tomorrows troubles today. I think I need a good nights sleep! Until later, May you feel God's hand in your lives!
Amy

Walking for real

I got back to the hospital last nite around 10ish. Tate, Kendall and I were bushed. Both boys fell alseep on the way up but not before we had an awesome conversation about heaven and hell. Long story short, both boys decided heaven is the better choice and they would rather obey Christ than live in hell. (Tate said the barrel expolding was hot enough and seeing what Cole looks they didnt want to look like him forever!) Talk about getting misty eyed! One thing that was hard for them to comprehend was the forever living in heaven part. To be honest a being forever om eternity is hard for me to wrap my head around but who cares how long that is once your there! :)

C had PT therapy today, yes on a saturday I thought maybe he would get a break. No such luck! The tech made him get out of bed and walk from one side, around the foot of his bed to the other side and then sit in his chair. He cried the whole time and Kendall (C's twin) was in the room and had his ears covered and didnt want to look. I'm guessing it was hard for him to see his brother in pain and having to endure that. We made him go to the waiting room. C did good he actually walked and wasnt doing his 'shuffle'. She had ahold of C's hands today and was leading him instead of C leaning on her. When the tech was leaving she said monday she's gonna bring in a walker and C can walk on his own. I know I'm his mom but that seems like pushing it a little. So I guess whatever gets us out of these 4 walls sooner. I hate to see him have to push himself through the pain and stiffness, but I know that it needs to be done in order for us to move ahead. Marv on the other hand would probally let him stay in bed until.....well forever. He hated having to see C go through that as well. He's more the compassionate one in our marriage.

We've been here 4 weeks today. It seems like a lifetime could have passed and yet time has flown. Its hard to explain how it can seem like both. If all goes according to plan we have maybe 3-4 more weeks here. Please pray these go quickly! On a side note...I was thinking of taking questions and then answering them on the blog. Let me if you have questions by checking the funny tab at the bottom of this post. If I have 10 or more then I'll consider doing that. Thanks and enjoy the rest of the weekend!!!
Amy

Change of plans

We had a change of plans today regarding surgery for C. One of the head nurses came in this morning and said Doc wants to take a better look at C's cadaver skin and donor sites, when he goes in for his dressing change. After Doc took a look he came into C's room and said he thinks that everything looks good enough and will wait and do all C's grafting in surgery next week. I was relieved that they dont have to put C under twice now and was also thankful that theres only 1 more surgery left! So I jumped the gun and did some math. If C has surgery next Wed as planned then 3 weeks after that we should be on our way out of Akron! (donor sites and grafts take that long to heal) Sweet!
The tub team has to put a different type of bandage on C today and its the type that needs changed everday. There is 1 member of this team that C is particularly fond of even if C doesnt say so out loud. This gentleman makes C feel at ease and I wish he was there everyday when C goes in but he's not. Thanks P for taking good care of my little boy!!!
C had an intense version of PT today and I knew this lady was gonna have her hands full the moment she came to the door. C does so much better with the staff that he's met more than twice. This lady was new and bless her heart she persisted. When she started with C's hands I could tell he was getting annoyed but then she moved to his legs. Big mistake! He screamed and cried and yelled 'I DONT WANT TO!, and 'LET ME GO'. Mind you I didnt raise my boys to talk back to people and to respect them when they ask something. She wanted him to swing his legs over the side of the bed so he could walk with her help. 'I DONT WANT TO' was his answer in the loudest decibel I've ever heard. Eventually she got him on both feet doing his 'shuffle' and then went back to the bed and he sat all by himself on the edge for a little while. She then left and said 'see ya later Coleson' but she got the biggest coldest shoulder I've ever seen. I told her not to take offense, and she said 'Oh this was a good session, I didnt get cussed at'. :)
Right after C's PT, a bull mastiff named Zeus came to visit, but I think he was feeling as worn out as C was and didnt do any tricks. I thought it funny that they were both feeling the same way! Kendall and Tate went up to see C tonite and were playing wii and having a blast. C was barking orders from his chair on how to play the games. :) I am so glad that the boys openly ask questions about C and what things are for. I've been taking pictures of C and different things he's been doing. I wasnt going to but then a few people have mentioned that in time we will forget things and that maybe one day C would like to look back and see how far he's come. I thought to maybe it'll help his story in the long run as well! I may or may not post them on here, I'm not sure yet. Gotta grab some shut eye.........
Amy

Roller coaster

The moment I set foot into the Life Flight chopper, I knew that our life was gonna change. I had so many things racing for attention in my head and yet couldnt pick one out to focus on. As I waited for the medics to get C comfortable, I looked over at Tate and Kendall being so brave across the field and couldnt stand the thought of having to leave them behind knowing Marv couldnt help them either. But I did and as the chopper lifted off I waved goodbye to them and life as we knew it! I dont remember much of the flight except the coolness on my face. I hate the fact that nothing will be the same again and I want to get angry and throw my fists in the air and shout at God 'Why us'? 'Why are we the ones that have to endure this pain and Why does my 5yr old have to go through all this torture that he doesnt deserve'? I thought I was a stronger person than this! I know God has wonderful things in store for us and he wont take us where his Grace can't sustain us, but I'm only human. I hope you wont think any less of me for questioning Gods plan.
When I first entered the hospital off the heli-pad, there was a team waiting for C and I was escorted to the waiting area till the Doc had a chance to look at him. A nurse waited there with me and began to inform me that I was in for a roller coaster ride for next few months of my life. I thought to myself is she the best they can do to comfort someone whose gone through a tramatic incident not even an hour before? I thought her to be very blunt and not wanting to talk to her anymore. Well her pep talk proved true. That evening I found myself moving up slowly on the side of the coaster, only to find myself at the bottom several hours later and not finding out when I went over the top! (Talk about a basket case in need of some meds!) We have been through this coaster so many times over the past few weeks, you would think we would know all the loops by now...NOT. Its not so much up and down as it was before, but like this evening I was reflecting on how far we have come. Not sure what brought on all the tears just now because we had a fairly good day today! Praise God!
C has surgery scheduled now tomorrow for 1pm. Please pray that Doc would be able to cover some burns with grafts instead of cadaver skin, so that we only have 1 surgery left. After a surgery it takes the donor sites 2-3 weeks to heal. It then becomes a waiting game. While they heal PT and OT can come in after day 5 and start with therapy. C will be measured for his gloves that are part of his Jobst suite (proper spelling) tomorrow. One more thing to cross off the going home list.
On a more lighter note I will get to go home tom evening if everything goes ok with tomorrows surgery. I love having that to look forward to! It makes me excited that I get to sleep in my own bed!!! C is sleeping beautifully right now so I will grab a few winks with him.
Amy

Walking

As my title states, C tried walking today. It ended up being more of a shuffle though. The PT got him to the edge of the bed and helped him down and then proceeded to support him. C was crying through the whole ordeal, but she still made him put his full weight on his legs. He said 'I'm to heavy', which made me laugh because he has put on some weight! (besides the fact that his muscles have atrophied) C then sat in my recliner all day. I thought that was kinda cool, it gave him a change of scenery so to say. He also had to have a test done today that measures his caloric intake. This involves him putting a clear dome on his head, oxygen gets sucked through the top vent, then he releases carbon dioxide through a hose in the bottom. He had to wear it for about 20 minutes. Of course he wanted to throw a major fit but when I saw the dome I told C that it looks like Buzz Lightyears helmet and then he didnt say to much. Later this afternoon our nurse comes in with a big Buzz Lightyear toy for C. Where does she find these things!!! C is getting so spoiled. She also brought him another linus blanket since he threw up on his last one. I'm afraid I will have a child who wont do anything unless its for a prize after we go home!

C also had some visitors today. Tank and Roxie came to see him. Tank is a black lab/rottweiler mix, and Roxie is a basset hound that gets way to many treats. They are members of the Doggie Brigade that come to visit sick kids here at Akron childrens. We had 1 other dog stop in, but out of the 3 I think Tank is C's favorite. He was bigger and did the most tricks.

C is goin to be fitted here in the near future for his 'gloves' that go with his job suit (job pronounced like the book in the Bible). The suit is made of a spandexy material that is tight and helps smooth out the skin among other things. When C is done with surgeries he will have several pieces that make up this suit. There will be a shirt, pants, a faceless mask, and sleeves. It needs to cover the area that C has had grafted. He will have to wear it 23 hours out of the day right at first. After that I'm not sure. Burn victims healing can take as long as 18 months. Pray that I will be disciplined enough to make him wear this outfit!

C is scheduled for surgery on thurs afternoon to replace some of the cadaver skin thats not looking good anymore. Doc wants to see if he can harvest donor skin from C to graft and what he cant get will have to wait until next week. Please pray that he will be able to get some grafting done, so we only have 1 surgery left! Thank you.

The burn center has been asked to compile photo documentation of the different services that are provided on this floor. (PT, OT, Respitory, ect) Our nurse who is in charge of this decided to make C the 'feature' patient. She asked me first if it would be ok, and I was a little hesitant. I told her to pick the old grandpa next door but she said he just sleeps! :) She figured we would be pretty open about it and people love little kids, not to mention this is a kids hospital (except the burn center, they take patients of any age). They have a project going on thats titled "Cans for Kids". People donate aluminum cans and the proceeds help burn victims go to camp. They also take the tabs on top separatly.

All in all C had a good day! Praise the Lord! His meds are working great that we changed last nite and he slept from about 11 last evening till 4 am. I asked the nurse if he slept all that time and she said yes! We woke up at 8:45 this morning, both feeling a lot better than the day before. Thank you all for your continued prayers. We really, truly appreciate them so much!
Amy

Meds

So my type A personality came out with flying colors today! C had a rough night and we had a new nurse, who was being shadowed by a nurse in training. To make matters worse C had his second most explosive bowel movement ever. (3am) This new nurse kept saying things to C about him not hurting and other things and several times I actually bit my tongue to keep from tearing her a new one! (pardon my french) So this morning I had a little chat with the head nurse who oversees these things and told her exactly how I felt. If these things were being said to me I could have (maybe) handled her better but you say stuff to my son whom you know nothing about, really rattles my cage! (btw she has never been married and has no kids) The nurse in question was spoken to. So I was thinking that we wont have the pleasure of having her company anymore, but v'iola, here she was again tonite. My dad thought maybe no one else ever had the guts to stand up to her and I'm the one to set her straight, but right now my plates full enough with out having to deal with an uncompassionate nurse!!!

C had his one major med changed because Doc thought it would maybe take care of his nausea and cut down on some itchiness. WRONG! I have never seen a more miserable child in all my life. He laid in his bed and was moaning and complaining like I've never seen anyone do. After saying something to 2 different nurses today and not being heard. I decided to really say something to the night shift nurse and she heard me. They switched C back to his original med and is sleeping ok right now. We'll have to see how the rest of the nite goes and tomorrow. I dont know if I was just wanting to see relief or if it actually seems like C is resting more comfortably. We will wait and see.

C also had his dressings changed today and came back without his hat, his whole left arm unbandaged and minus about 100 staples! His face graft was all cleaned up and the steri-strips were gone. C looks amazing! While I would love to give him a bath and clean out his ears I know that will come in due time. Everytime they have brought C back from his dressing change he would sleep his meds off for several hours and then wake up. Today he was sitting in my famous recliner, upright, looking like he owned the place! Of course he asked to watch his one of his all time favorite movies Toy Story (aka woody 1). Later a child life nurse came in and had little toy cars of course, and a wii console with 5 games. Not to mention that one of the games was a Mater racing game from the movie Cars. His face lit up and he was happy. He didnt want to bowl but was willing to tell me his 'tricks'. For those that dont know C is our Wii champion bowler at home and isnt afraid to tell the staff here! :0)

I wasnt planning on writing this much but it seems like when I get started the brain overflows. Sorry for the novel...till tomorrow!
Amy

Day 22

So we have been here at Akron Childrens for 22 days today. After being home yesterday, I'm really missing home. The everyday normal things I miss too. Mowing yard, loading the dishwasher, doing laundry, helping Tate with his homework and spelling words. I'm missing out and while I would have liked to take a vacation from those things before, this is so different. I know I sound selfish, but I had all these things that I wanted to do this summer. I was going to plant a garden, have a washline, a gigundus yard, among many other things! This is the last summer before I have all my boys in school. The twins go to kdgtn all day everyday, and I wanted to make this last summer special for them and Tate. I had so many plans and now they are shattered! I want to get mad, throw a major fit, cry, scream and get down on my knees and beg God for a do-over! If only that would work, but reality is my son is lying in a hospital bed hooked up to monitors and tubes!!! I am sad though when I think what could have been. I dont understand the reason for this happening to us, but I know someone who does! So I put my faith in Christ and let him lead us where he wants us to go!

When we first got here we were in survival mode and now with C doing better I want to hurry him along and go home. Burn patients are the last people that get hurried out of the hospital. Even after we go home, we will be making trips back here for therapy at least 5 days a week. There goes the summer of fun down the drain. I am sad for Tate and Kendall that they have to miss out on summer fun, because of therapy and everything we will be doing with C. (Im having myself a pity party.)

Tomorrow morning C gets another dressing change and hopefully will reveal more skin instead of these 'mummy' bandages. Doc wants to hopefully friday change out the cadaver skin with more cadaver, since the old isnt looking to good anymore. If you think of C throughout your day, please pray that his itching goes away and that he wouldnt have any more stomach pains. The stomach ouching on the outside is from the staples that is holding on the cadaver skin. His inside ouching we dont know whats from. It could be a number of things (meds, anxiety, worry) He does throw up occasionally still, but most of the time I think his inside pain comes from nerves. He worries when the nurses come in and if they have to stick him and when the therapists want to get him moving, he always says his belly hurts right away. Shoot I would be the same way if I were in his shoes and I dont blame him for not wanting to get poked again. He's been through enough already! He still is a trooper in my book though!

Sorry if this post sounds like my selfish side coming out, but as I said in the beginning I am honest and I wont hold anything back. These are my feelings and this is the way I deal with them is by writing. I have been keeping a journal since 2004, and it helps me to release my thoughts and emotions. The thing with this blog is that its public knowledge after I press 'post'. I hope I didnt sound to depressing and I hope you all have an awesome week!!!
Amy

Praises

We had an awesome time together as a family last night and today! After C's dressing change and he was in his room today he slept a good long while. We are glad for all the uninterupted sleep that he gets. Last night was rather brutal for me. Every 45 minutes to the second almost, C was wanting me to 'scratch' his back. I would meander over and just when I thought he was sleeping again, he'd wake up! :( I'm not used to those nights anymore. (after the twins were 3 mon old they slept through the night, so its been a while). Any way my point is the nurses left the bandage off of his whole left arm except the bicep, and pulled his tube out of his stomach (not the feeding tube). He has a feeding tube that goes in the other nose hole and is placed in his intestines. The tube they pulled out was to suction out bile that his body was making too much of and to relieve any pressure since C cant burp right now. C's grafts look awesome! This is coming from someone who has no idea how a graft should look but C's look really good!!!! This morning when C got up he had his 'cap' totally removed from his head and all that we could see was what looked like tape and some 'scratches'. His head was the donor site for all his facial grafts. The doc thinks that by monday C wont have a head bandage anymore! He looks like a cancer patient now because the Doc shaved his head. To me he looks as handsome as ever! Hair grows back anyway! :)



Marv was so kind to let me come home again tonite. I love him so much! He puts my needs in front of his! While I'm glad for the time out of the hospital, I cant wait to go back! Tate wanted to stay at the hospital again tonite. He likes the idea of being able to go down the hall and getting pop and snacks out of the vending machines. Not to mention being able to get pizza at 10pm. He's so funny.



Thats all I have for now...Check back every day. I try to post later in the evening after visitors have gone home.

Amy

Itchiness

My title explains it all! C is itchy. While thats awesome for us and for his healing, it makes for a miserable C. He is needing his benadryl before the 4 hrs is up. Theres nothing else to do for him really. I try to scratch the places for him that are itchy, but a few are hard to reach. His bottom is a place I cant get to and wouldnt you know, thats one of the most itchy spots. C is becoming more bold in his attempts to scratch himself. When he has his hand splints on he tries to itch his head and his is not supposed to touch his head and face at all.

We got a nice surpise tonite. Marv, Tate and Kendall are staying at the hospital with us. Tate is sleeping in C's room with me. Marv was able to get a room at the Reinberg Suites downstairs. Tate and Kendall are concerned that C wont be able to do the things like he was before the accident. While I have explained to them over and over that he will be playing ball and mario cart in no time, they still have their reservations. I totally understand that. The minds of a 5 and 7 yr old dont comprehend and I dont expect them too. They need to be shown and in due time C will show them! Tonite I think though they were encouraged because C was playing DS and they were so amazed and C got all excited and loud. It does C wonders when the boys come up to visit, well to be honest it does us all good!

Tomorrow holds another dressing change for C and the Doc wants to take another good look at his grafts. I dont like dressing changes! They give C a lot of meds to knock him out and make him not remember. Thats not the reason for my dislike. My dislike comes from it throwing a wrench in our day. C is usually zonked out for several hours after and when he wakes up it takes another hour or two to get him back to normal. I guess it needs to be done and as long as he's not in pain I shouldnt mind.

Have an awesome weekend and enjoy the sunshine for me!
Amy

Cruising along

What a lazy day this has been. I went home last nite and got some shut eye. Lucky me Tate had a scheduled 2 hour delay so I got to sleep in as well!!! Marv and my dad spent the nite at the hospital with C. I got the things done that needed my attention and came back up to C.

The tub team re-dressed all of C's bandages and they will be doing that every other day now, which is a relief! Doc said that everything is still healing nicely, but the cadaver skin on the fronts of his thighs will need to be removed and others put on. That will take place sometime next week. They placed a different type of bandage on C today. The cover on his wounds looks like denim, but I was informed that its not and it has a microbial barrier on it to prevent infection plus an absorbing agent to dry up the seeping. Before with the other dressings they had put in irrigation hoses under his bandages to get into the burns. The hoses have tiny little holes against his burns that let the solution seep out. C would be hosed down 2x a day with an antibacterial solution to prevent infection and to keep his grafts from drying out. I felt sorry for C because he used to lay there soaking wet and then he would chill. He got the royal treatment though. The nurses brought him warm blankets and sheets and changed his bedding 2x a day. C's next surgery wont be until the week after next. Doc wants to let his donor sites heal more, which I'm glad for. C also got his bandages taken off his fingers and did even better during his PT and OT today. The techs were really impressed. Although C was not, because we turned his movie off so he could concentrate! It was funny, after the tech said 'all done' he told her to move away from the tv. She made sure to tell C that she was coming back tomorrow!!! :)

Speaking of royal treatment, the nurse we had this afternoon spoils C like crazy! Today was only the 2nd time we've had her as our nurse. The first week we were here she brought C a big stuffed teddy bear, that had a B on his vest. She said that the B stands for the best boy ever. Now today she comes in with a remote control racecar. She couldnt have hit a bigger home run if she had tried! C loves race cars, monster trucks, and jets! She's awesome and is defininetly on our top 5 list! She has a loving way about her. You can tell she loves her job! Some nurses just have it and some dont. MJ if you reading this Thank you again for your kindness!
Amy

Change

Today Marv came up to relieve me of my recliner and duties at the hospital. He's staying with C tonite and is so kind to let me have my bed again at home. Personally if you ask me he just wanted some space on the desk at home to put his elbows. He told me it was a mess but I was like how bad can it be. Uh yea, couldnt see an inch of it, because it was covered in paperwork and unopened mail. I had to take a deep breath, then I grinned and beared it! Just before I left Marv tells me that the computer wasnt working either. Great! :( To make matters worse C was crying because he didnt want me to leave. :( (heartwrenching)

C is getting more and more itchy. While thats a good thing for his healing, its making him more miserable. If you think of C, pray that his stomach would heal inside. He is still on constant nausea medicine. One praise today, C drank about a half of a gatorade. That may not seem like a big feat but for him it is. Plus he didnt throw it up!!! The doc was in this morning to look at C's face graft and is still impressed with the healing. Praise God! The less amount of scarring the better, especially on his face! Yesterday they took a few of the staples out that were behind his ears. Hopefully by the end of the week C will also be able to get rid of his hand bandages. His fingers will be free!!! This will help his physical therapy(PT). Today was the start of Pt as well. I had to turn off C's movie he was watching to get him to concentrate on the tech. That for one didnt impress him. The tech wasnt in very long but there was an exercise C didnt want to do and started crying. Pray that he would cooperative with the PT techs. The sooner he masters the everyday uses of his hands the better for recovery! C is up for a good part of the day now and only needs about 1 nap in the afternoon. I'm kinda dreading the next surgery, just because he's making such great progress right now and I hate to have a set back with the surgery but I know that he needs it.

While driving home today, I was again overwhelmed at the change going on outside. A part of me wants to put the outside world on hold, till we are all back home as a family living under one roof. Oh how I dream of that day! For now though the Lord is granting us strength and patience like I've never experienced in my life. I feel his arms around me and sometimes its through the hug of another person. God is so great and he is all knowing, so I have nothing to lose but everything to gain by allowing him to guide us day by day, hour by hour sometimes. Hoping you will to feel His love today!
Amy

A Smile and a Laugh

Waiting, waiting, and more waiting. I've never been a patient person ever in my life! Those that know me find this to be true. I try to get things done now and hate when I have to wait. Thats why I'm so surprised that I can sit on the recliner in C's room and not be ancy. The only thing I know is the Lord is granting me patience in this time of waiting. Thats how its gonna be for the next 10-14 days till C's donor sites heal. The doc can then determine how much more grafting can be done and if C will have enough skin to go again.

Yesterday was Sunday and I couldnt find any decent cartoons on tv and C wasnt wanting to watch any movies. So as I was flipping channels on our pathectic tv we came across college womens bowling of all things. C right away wanted to watch as he is our champion wii bowler at home. Seriously he puts us all to shame! :) So there were two teams playing best of seven and he found this entertaining. We picked the team we thought would win and of course they ended up losing. The whole time this was on he was chatting up a storm and was almost yelling at the players when they left a spare open, or missed it completely. He actually laughed once out loud but was smiling through all the games. Oh well he had a blast. It was almost like it was a connection to home or something. His laugh and smile did wonders for my heart and soul! I was beginning to wonder if my C was still in there somewhere or if the accident had taken him away and left just an empty shell. Thank you God for placing an ornery smile back on his cute little face. (after his laugh he said 'mommy I cant laugh anymore it makes my belly hurt')

The nurse that takes care of pain meds asked me yesterday morning if I thought C was comfortable and getting rest like he would at home. I said right away that he seems tense and uncomfortable. She upped his dosage just a tad and I couldnt believe the difference in my little man. I didnt realize that he had such a high tolerance for pain, but after seeing what a difference that made I will now be keeping watch to make sure that if he gets to uncomfortable that I make sure that his meds are at the correct levels.

Doc was in this morning and is still pleased at how C's face graft is healing. I can see a difference from night to the next morning. Its getting pink and adhearing nicely to his face. C has just today started itching from his previous grafts which is an awesome sign!!!! I hate that he has to itch but on the other hand, it means things are healing and he is making progress! YEA! Tonite just before bed C told me his bottom itches and he wanted me to scratch it. I was like 'ok how am I getting down there'. A nurse came to my rescue, she had to change his diaper anyway and look at his catheter. So we continue to wait. If C crosses your minds at all please pray that he would start having an appetite and that his upset stomach would diminish. They are giving him a nausea medicine but its wearing off before hes allowed to have it again.

Im getting the hang of how to sleep comfortably in a hospital recliner. I think I'm going to write a book on this matter and title it '10 ways to minimize backache in a hospital chair'! Mind you this isnt the plush type in your homes. This make and model comes with wooden arms and and part of the back is open. With very carful positioning and a very large pillow I've mastered this feat quite well! You ask yourself why not stay at the Ronald Mcdonald house across the street or the Reinberg suites downstairs. Well I can sleep pretty much anywhere ask Marv. I've only had 1 stiff neck. The Ronald house has been full and why would I want to be away from C during the night. I couldnt stand not being here if he woke up and would want my comfort and I couldnt give it. Besides I go home once a week so I can get my sprawled out, no holds barred sleep there. Its a small sacrafice I'll make for this time in my life. Time to get nestled in my 'comfy' chair! :)
Amy

Sunday

These past 2 weeks have just flown. The times where I've gotten to sit down and catch my breath are the times I've either slept or prayed. C is up more during the day and then I hate to be sleeping in case he needs something. Last sunday it didnt bother me not goin to church, but today I miss my church family, the worship and the 'lift' I get from being around those faces I only see but once a week! I trust you had an awesome time of worship today and have been filled with the presence of the Holy Spirit!

C had a major bowel movement this morning. I mean talk about hitting places no poop should ever go. The tub team decided to change all his bandages. This my friends is a major process. It takes 7 team members to accomplish this feat! C usually tells me when he has to go but this morning he told me after he was already done. :( I always have to go out of the room when this takes place. Not that I want to see him writhing in pain, but I feel like I need to be there to comfort him. As all moms do! Anyhow I could hear him screaming from the waiting room, talk about yanking on my heart strings, I just wanted to rescue him and tell them to stop but he needed cleaned to minimize infection. *tears* He was heavily medicated and is now sleeping comfortably. I was a little perturbed yesterday morning at one of the nurses. ( and I dont care if she s reading this) She was saying that C has pathectic little crys when they do his diaper change and roll him from side to side. I wanted to smack her in the face and ask her how well she'd fair being in his shoes! But I refrained didnt want security taking me away from my little boy! I try to keep my distance from her. Ok no more negative things its wearing me out!

Marv and I just want to say Thank You again from the bottom of our undeserving hearts for everything everyone has been doing for us. We will never fully know the sacrafices people have been making on our behalf till we reach heaven doors. Our hugs go out to each one of you!
Amy

Clarification

I believe that some people are misunderstanding what goes on when C goes in for his baths and they took the dead skin off. Years ago, and I mean several decades (I think) doctors used to put burn victims on a 'scrubbing table'. Which they then proceeded to scrub them down with a brush to get all the dead skin off. I've been hearing a little about this that a few of you think this is what they are doin with C. I assure you it is not. The tub team here uses an inflatable chair that sits in a warm water tub and they use Johnsons soap as gentle as can be to rinse away dead skin and then they have a lotion they use that 'eats' away the rest of the dead tissue. Theres no scrubbing of any kind going on! I'm not sure if people are just ignorant and think that we have no clue but I assure you the staff here explains everything 100%. They ask so many times a day if we have any questions that it gets annoying. If we do they stop and tell us exactly who what where when why and how. Just thought I had to clarify.
Amy

Third surgery

As I'm sitting here in C's room with everything semi quiet, I cant help but reflect on how good and great our God is! So many things could have gone differently today and yet surgery went as smooth as possible. Again the Doc is happy with the graft and he got eveything done on his agenda. C has a 4 piece graft from one ear down his cheek, across his chin up to the other ear. There are 2 bigger pieces and 2 small ones. There are no dressings on these grafts because the nurses and Doc need to be able to see if they are taking an dif theres any blood pooling underneath. If there is then they need to be able to nick the graft and roll out the blood to make certain the skin adheres to his face. Sorry if this grosses anyone out but as I mentioned before I dont hold anything back! Doc was also able to do C's arms and his thumb. All in all very pleased with today! Thank you God for being there every step of the way! Thank you also to all who were praying!

Marv struggled a little when we got to the recovery room. It hit me a little to and made me a tad bit queesy, but it passed quickly. I then realized that after they wash him down tom morn it'll look tons better. I got to see C's fingers today after surgery, they didnt bandage them up so the nurses had to do that when he was in his room. They look great as well...besides having to do some therapy Doc says he'll regain use of them completely! Another blessing!

C wont have any surgeries for a few weeks. His donor sites now need to heal, so that Doc can harvest more skin later. The tops of C's legs and his belly are the only things left to graft. They are covered with cadaver skin for the time being and should heal some more till his donor parts have healed. Hopefully one or two more surgeries and we shall be done.

We love having visitors at the hospital! However if you have any sort of sickness, or have been around anyone thats been sick for a period of time, we ask that you get well and come see us at another time. With C having open grafts we cannot have anyone at the hospital thats sick or could be carrying sickness. We also regret to say that we wont be allowing visitors in C's room either. While you may think thats extremely rude of us, please realize that we are just looking out for whats best for C right now. If that offends you then it will just have too.

Gonna try and catch up on my zzz's.
Amy

Back Again

How I missed my house! The cozy carpeting instead of cold hard floors. The sound of the boys playing instead of the whirr and alarms of machines beeping. But while I was home I thought constantly of C and if he was ok. I got the chance to get a much needed massage. I never fall alseep but this time I did. She knew exactly where I hurt and it felt awesome. It did wonders for my well being! I got caught up on a few things an dlife there shall go on with out me until next week! :)

Marv on the other hand didnt have a good nite. He got to sleep on the hard couch that his 6 foot frame can just stretch out on. C had an average night and was wide awake today when I got back. He was doing the secret handshake and watching movies and cartoons with Marv. Doc said C is healing nicely all over and his fingers look good. YEAH! C is going in for surgery tomorrow at 8am. Doc will be taking skin off of C's head and grafting his jawline and thumb. If he has any extra he will also be doing the backside of C's arms. I asked why Doc couldnt use the skin off C's back to do those areas. Doc said the pigment in your face and scalp have a yellow undertone and the rest of the body is red. He said that you wont want red skin graft on a more prominent part of your body like the face. Makes sense to me! The more normal C can look after this is over the better for his self esteem!

I was listening to Bebo Norman on the way back to the hospital and happened upon his song 'I will lift my eyes' (I think thats the title).
I will lift my eyes to the maker of the mountains I cant climb.
I will lift my eyes to the calmer of the oceans raging wild.
I will lift my eyes to the healer of the hurt I hold inside!
I will lift my eyes, lift my eyes, to you
cus you are and you were and you will be forever the lover I need to save me.
You fashioned the earth and you hold it together God, so hold me now!

As I was listening to this tears streamed down my face because he is the ultimate healer and mover of mountains and in him is where I put my trust to see us through these next several months and possibly year. He knows whats in store and will equip us to follow through no matter the circumstances.
Amy

Home Sweet Home

I cant believe how much everything has changed in about 11 days! On my drive home this afternoon I couldnt help but gawk at how green things are. Coming into town I noticed a few buildings being torn down also. I havent had time to catch my breath since I've been home. I have been taking care of a few bills and had to take time out to visit my newest nephew! He does my heart wonders! I also had to get a few things together to finish our dreaded taxes and a few parework stuff that the hospital needed.

C is holding his own, and doing as good as can be expected. I miss him and I feel like I'm neglecting him by coming home, but on the other hand its a break that I've needed. Staring at the same four walls day in and day out can make one go stir-crazy. Not to mention the same cafeteria food can become barfish. C has another surgery scheduled for friday and the doc wants to concentrate on his jawline, his one thumb, and the backs of his arms. Granted that he can get enough donor skin from C's head to do all that. If not some of his arms will have to wait until the next time. Some aspects of this would fascinate me if it werent for it being my son having to go through this. Praise God, the doc said that C wont need surgery on his hands just a lot of therapy and he's happy with the way they are healing!!!! :)

A few people have been asking for piks while C is in the hospital and I will just mention that I will not be posting any for this time. I myself dont want any memeories of how he looked in the hospital, I am afraid that will be forever etched in my memory the way it is. As C progresses I may post a few but for right now I will not. I will chat back later!
Amy

Uneventful day

I wish I had something interesting to write but as my title states, today was uneventful. C has been running fever ever since his surgeries. It worried me in the beginning, but the doc and nurses said they would be concerned if he wasnt getting them. I continue to be amazed at the staff here in the burn unit ICU. They would do anything to make our stay more comfortable. They are always asking if we need anything or if they can get us something. Its hard for me to say 'um yeah how bout a milkshake or a martini'. (just to clarify I dont like alcohol) I'm always the one getting things for people, or making things happen. (comes with being the oldest I guess)Its hard for me to let go and let others but thats just one of the many things being shown to me throughout our short 10 days here already! Marv and I continue to be humbled everyday by different things that are happening.

Tonite Tate and Kendall came up with family to see C and I again. I just had to squeeze them and hold them tight. I almost couldnt let them go. When I try to hold C, I can only touch his head and a little bit of his arms and feet. The rest is all bandaged up mummy-like. I didnt realize how much I missed the feel of my boys in my arms! I would take them with smelly hair and dirty fingernails anyday. Hopefully if everything goes well tom...I will be goin home tom nite and thurs, and then be back up for C's surgery on fri. It will do my heart some good to go home 2 familiarity.

Exhausted

I did'nt get my post up for yesterday, due to the fact that I was totally exhausted. Its really funny how that works because I sat around the waiting room and C's room all day, not doing anything. Its a mental thing I think, just draining on my spirit.

C had surgery yesterday afternoon. They took him to the OR around 2ish and the doc had said the surgery should take about 2 hrs. We ll 2.5 hrs in the nurse calls out to the waiting room and said its gonna be another hour because things were goin well. Ok fine with me thanks for the update. I braced myself for that hour and then it came and went along with another hour. The waiting room volunteers started to go home and people started dwindling down. Finally it was Marv, a friend of mine and myself all alone. It was very trying because for those who know me, know that I'm not a very patient person. It was all I could do not to go crazy inside. Then finally we got the call from the recovery room that C was all done. Whew...that was a long day! Everything went well and C has at least 1 more surgery on fri, if his donor sites have all healed. One praise that we have is C will not need grafting done on his fingers!!!! He has a spot on the side of his thumb they will need to do, but I was tickled when the doc said that!

Yesterday Marv called me about something and said he was on his way up and I asked him who was bringing him up and he said he's driving himself. Finally he has almost all of his bandages off his hands. He feels like a free man! Its just one more thing that I wont have to worry about.

Am gearing up for today so I shall say good bye until later.
Amy

Another Day Down

Happy Easter to everyone! We serve a mighty God and I am so thankful that Christ is risen, so that we may have eternal life! I trust that you had a great day and got to spend it with family and friends!

Today was fairly uneventful besides C having a 103 fever.....this is the highest one so far. The nurses were able to get it down with meds and its been down ever since. Tomorrow is surgery day again. He is scheduled for around 1-2 pm. Hope fully the docs will be able to do whats on the agenda. Everyday that I cross off the calendar I think its a day closer to C's release and the road back to some sort of normalcy. I have accepted the fact that our lives will never be the way it was, but am willing to forge ahead knowing that I'm not the one in control anymore. C was happy today with his easter basket and although he cant play with anything that was in it, I could tell that he was tickled! Thanks auntie B! C is looking a little more like himself everyday. The swelling is goin down and his baby blues are looking bluer as well! Initially in the first 2 days C was in ICU, he had gained 13lbs of fluid, he is now down to about 7, so his tummy and legs are still holding some water. Within the week or so that should be goin down as well.

Thank you all so much for your continued support and prayers. Marv and I both are so appreciative of everything that people are doin behind the scenes! Please pray especially for Tate as he has to return to school tom, and that he would be able to field questions and concerns from classmates with grace. With Love,
Amy

Letter Color

I am so sorry for the blue lettering in my post below. I know its hard to read but I've spent about 45 minutes trying to figure how to fix it and its just gonna have to be that way!

Peace

My days seem to all be blending into one another. Its hard to believe that today its been a week since we arrived here by chopper. I find myself not being at a loss for people to talk to. If its not visitors, it text messaging or phone calls and I love each one so please keep them coming. If I dont get back to you right away its because I may be preoccupied or exhausted. So be patient.

C had an ok day today. He didnt run a temp but I am concerned yet that he hasnt had a bowel movement. I hate the thought of them having to give him an enema. :( The doc was into tonite, and mentioned that C is exceeding his expectations and Marv and I were thrilled. C had surgery yesterday afternoon and the original plan was to graft the fronts and backs of his legs and part of his bottom. When the doc got into the OR he decided to clean off all the dead skin and the put on cadaver skin on the wounds. They are keeping his bandages moist to prevent drying and from sticking. C has surgery on monday again and the doc plans on starting with his legs and using his own skin for the grafts.

The reason for my title peace is because last nite I was sitting here in C's dimly lit room and I was praying. After finishing I had this tremendous sense of peace flood over my whole being. I have felt the Lords peace wash over me before but this was so heavy I wanted to get lost in it. My prayer is that you will all at some point in your lives feel this same peace!
Amy

Today Coleson had the first surgery of 3, I think. It all depends on how the next 1 or so go as to how many more he will need. He did fairly well today. Doc was planning on grafting the front and backs of C's legs with his own skin but when he got in there he decided that his wounds needed cleaned up. Therefore he ended up using cadaver skin to act as bandaids until monday his next surgery. Then the doc will start grafting C's skin to start repairing.

It was so difficult to see the docs wheeling C off and standing there praying to God that this wasnt the last time I would tell C that I love him. For all the love I hold in my heart for my kids, I know God loves them even more than I. We can truly feel each prayer thats being lifted on our behalf and may God bless each one of you who take the time to breathe a prayer for us. I know we could not make it through if it werent for such an awesome support that we have.
Amy

I am new to this world of blogging, and I hope you dont have high expectations of me. I wanted to have a place available for my thots and to let friends, near and far know how Coleson is doing. I'm sure that with everything thats goin on I wont be able to publish nearly everyday either. Please know that I am going to be honest in my thoughts and feelings and that I'm not one to hold things back. So please check back.
Amy