Jesse in 2008 -- LeBonheur Children's Hospital

December 5, 2008 -- Final Update

Jesse had his follow-up visit with the surgeon yesterday. She said his grafts look good and he won't need any more follow-ups with her. She said the physical therapists will now track his progess and he'll need to see them periodically for the next year or two. In the meantime, Jesse can go back to school and return to his normal activities.

The physical therapists have ordered a compression garment that he'll have to wear for a year to keep pressure on the burned areas to minimize scarring. They also showed us how to do the massage on the burned areas once a day, which will also help minimize scarring. The scars will develop in some areas and fade in other areas for the next 12 to 18 months. After that they will pretty much remain the same for the rest of his life.

So the hard part is over now and we can just coast along. Jesse returns to school monday and I return to work. Tomorrow will be one month since the accident happened. Thank goodness Jesse will be well for Christmas and for his 10th birthday, which is January 12. I want to thank everyone for their prayers and gifts and support. It has all meant so much to us during this really difficult time.

I won't be updating this web page any more; but hasn't it been a wonderful way to keep friends and family all over the country informed? What in the world did we ever do before the internet? You can keep up with Jesse's life and adventures through his blog, http://jbarberms.blogspot.com.

December 1, 2008

Jesse continues to improve. The last of the coverings from his leg have come off and he is able to walk almost without limping. He is still bothered by stitches in the grafts which are supposed to dissolve but haven't yet. They are causing him a lot of pain, especially in his shoulder.

We have the first follow-up visit with the surgeon on Thursday at her offices, and Wednesday is his first physical therapy appointment at LeBonheur Hospital.

November 28, 2008 -- Afternoon

Jesse is outside playing with his toy guns! He can only walk slowly and hunched over, the shirt and jacket hurt his left shoulder, but he's actually playing. Yay!

November 27, 2008 -- Thanksgiving

Jesse is doing a little better each day. He even went outside today for a few minutes. He is making up for his lack of hunger in the hospital--I can't seem to fill him up now. It is so good because they have told us that nutrition is very important to the healing process. He needs protein, protein, protein.

We just had a normal family dinner of pork chops today, just the 3 of us. We are so thankful to have Jesse home safe and healing well.

November 26, 2008 -- Morning Update

Jesse and I both were finally able to sleep through the entire night for the first time since this happened. Yay! His itching is hardly bothering him now that we apply the prescription moisturizing cream on the burns and grafts before bedtime.

I understand now why they said he will have to do physical therapy. He can't straighten the leg from which they took the skin for the grafts, and he walks all hunched over due to the large grafted areas on his sides "pulling" when he stands straight. Also, he has trouble moving his left shoulder and arm due to the large grafted area on the top of that shoulder. He has his first physical therapy appointment December 3rd.

November 25, 2008 -- 3:30 a.m.

Jesse is suffering very much from itching. The healing skin itches a lot and is driving him crazy. He has a prescription medicine for the itching, plus they told me to give him Benedryl, but it doesn't appear to be helping all the much.

November 24, 2008 -- 7:00 p.m.

We are settled in at home now. Jesse is able to move around much more easily too. We are so glad to be home!

November 24, 2008 -- 11:30 a.m.

We have everything packed and ready to go. We're just waiting for the discharge papers.

For the next year Jesse will have to wear a compression garment to diminish scarring on his torso and shoulders. He'll also have physical therapy for a year, as well as eventually having scar massage therapy. He has exercises to do 2 times a day, plus cream to apply to the burns 2 times a day for the next year. And of course he can't be in the sun for a year and has to use suncreen on his neck whenever he sets foot outside. Whew! I guess we are far from done with this ordeal.

November 24 -- 10:45 a.m.

We're going home!

We'll have to come back in a week for them to check the grafts. In the meantime, I'll do dressing changes at home every few days.

November 23 -- 5 p.m.

Jesse has had a great day! He ate a large breakfast and lunch, plus part of my lunch. His leg still really hurts but he is able to walk on it much more even though he is only taking regular Tylenol for pain relief. This afternoon they showed the movie Open Season in the auditorium which he really enjoyed viewing. He was able to walk all the way down there and back without his leg getting too stiff in between.

I can't wait for tomorrow so we can leave this place! I feel like a kid on Christmas eve: I'm going to bed at 8:00 p.m. so the morning will come faster.

November 23 -- afternoon

I found this great page containing information on burns: www.pediatriconcall.com

November 23 -- 11:45

Jesse is feeling great today except for his leg. He still can barely walk on it because it hurts. The doctors are all saying we will go home tomorrow after going to the starlight room. First thing Jesse did today when he woke up was tell me to start packing. He's as ready as I am to get out of here.

Each time you go to surgery or the starlight room the child gets to pick a toy from the "Bunny Room." They don't really have toys for 9-year old boys so Jesse has gotten like 6 of the rubber balls that you sit and bounce on. He did get 2 guns that shoot foam darts, which he's had a lot of fun with. Loading all his stuff into the car is going to be an experience.

November 22 -- afternoon

Jesse is feeling better each day. I am making him walk every couple of hours to try to keep his leg from stiffening so much and hurting. He is making good progress and is able to put weight on that leg now. He is also eating very well now that his appetite has returned.

Here is a photo of him stretched out on the sofa and concentrating hard on his Playstation 2 game, Call of Duty. This game was bought for him using a little of the gift that the Faith Quilters of Barton, MS, gave us. Grandma is going to get him a Playstation for Christmas so he's already counting the days. The mother of a wonderful teen-age boy who went to Heaven a few months ago gave Jesse her son's Gameboy Advance and a few Playstation 2 games. She said she knows he would be happy that Jesse is enjoying the games.

November 22 -- morning

Jesse had a good night. He watched movies and played army men until late then slept until almost 10 a.m. His leg is still hurting him but we've got to get him up walking on it anyway. Hopefully it will loosen up and be less painful as he moves around.

November 21 -- 9:00 p.m.

Jesse had a good afternoon. He ate cheese pizza for lunch, then he rested and watched movies while I did crossword puzzles. He is still eating well. He ate 1/2 a turkey leg and some macaroni and cheese for supper with Doctor Pepper to wash it all down. It was not nearly as much as he ate yesterday but all the sedation they give him in the starlight room affects his appetite.

His leg is really hurting him where they took the skin for the grafts. It was excruciating for him to walk this afternoon yet we had to make him do it. I tried getting him to walk again this evening but it just hurt too much. I'll be asking the doctors in the morning what we can do to ease his pain. It seems as if it is getting more painful instead of less painful so I hope there is not something wrong. Hopefully it is just my imagination.

This evening Jesse has been putting together a pre-painted "snap together" model plane that Grandma bought him in the gift shop. He says it is a Japanese Zero plane. It was a wonderful distraction while the nurse was removing a bunch of tape from the back of his hand and an IV that had gone "bad." Tomorrow he plans to set up a battle with his army men and the Zero plane.

November 21 -- 11:00 a.m.

We don't get to go home today. The surgeon wants to give the grafts more time to settle. They'll wait until Monday, then unwrap him and check again. They did, at least, remove Jesse's nose tube so he can eat better.

November 21 -- Morning 9:15 a.m.

Jesse ate very well but didn't want them to take out the feeding tube while he was awake yesterday so they do it today in the starlight room. We are about to go down to starlight for the dressing change on his grafts. His leg, the "donor" site, is moving much more easily this morning, though it is still very painful.

Last night we went to the auditorium to watch Kung Fu Panda and eat pizza. Jesse ate 2 and 1/2 pieces of pizza! Then when we got back to his room he ate a lot of chocolate ice cream. His appetite is coming back. Yay!

November 20 -- 10:00 a.m.

The doctor said Jesse could have his feeding tube out today if he eats well. They have also changed over his meds from IV to oral in preparation for us to go home. However, if he doesn't eat well today and tomorrow then even if the grafts look good we'll still have to stay here until they're confident he'll eat enough.

November 20 -- Early

Jesse didn't have a good day yesterday. Overall he felt much better, but his thigh hurt him so much most of the day. In the afternoon they changed the bandages on his thigh which really hurt. Finally at evening they changed his medicine to Tylenol with codeine and that helped a lot! He had a much better night, only waking one time.

He did eat much better yesterday, eating a few bites at every meal. He needs to eat a lot more before they'll take out his feeding tube though, and until they take out the tube we can't go home.

My mom left to go back to Florida, so it is just me and Jesse now.

November 19 --- Morning

Jesse had an uncomfortable night. He had to get up every 2 hours to use the bathroom, and with his thigh hurting so much that was difficult.

We don't have to do anything but wait today and tomorrow, then Friday he goes to the "starlight" room where they will sedate him and change the graft dressings. Depending on how everything looks we may be home by Monday.

My mom is leaving tomorrow at 6 a.m. so it'll just be Jesse and me here for the last few days.

November 18 -- Evening Update

Jesse slept most of the afternoon, which is good. He ate some ice cream and is snoozing again. The doctors say the grafts looked good. They'll check the grafts Friday to see what percentage has "taken." Depending on what they find, we may be able to go home a day or two from then. Jesse's thigh is really hurting him.

November 18, 2008 -- Afternoon Update

3:15p.m. -- Jesse just got back into the room. They ended up taking the skin from only one thigh instead of both so that is fantastic. His thigh hurts him the most right now. Other than that he is OK and trying to play the StarWars video game but he's still a little out of it.

November 18, 2008 -- Morning News

10:00 a.m. -- Jesse has gone into surgery to have his skin grafts. Surgery should take a little over an hour, then he'll be in the recovery room and I'll be able to be there with him. He'll come out all padded, wrapped in gauze and Ace bandages. He'll stay wrapped for 5 days then they'll check how the grafts are doing, and if all is well we'd be able to go home.

November 17, 2008 -- Afternoon Update

Jesse's skin graft operation is scheduled for tomorrow morning. He has eaten a tiny bit today which at least is an improvement.

November 17, 2008 -- Morning Update

The doctors say Jesse is ready for the grafts now so they will schedule him for surgery tomorrow or Wednesday. After the grafts he'll stay here 5 more days then they'll unwrap him and if all is well we'll be able to go home. So we hope to be home around next Monday.

They have put him back on regular morphine doses to better control his pain. Hopefully he'll do much better today. They are not too concerned that he isn't eating because they say it is common and that his appetite will return after the grafts.

November 16, 2008 -- Update

Jesse had a much better day today. We had been going every morning to the "Starlight" room where they sedate him so they can clean his burns and change the burn dressings. Today they gave us a little vacation so we didn't have to go. He had morphine at 4 a.m. so he felt well enough in the morning to go to the cafeteria with us and eat a couple of pieces of bacon, a few bites of scrambled egg, and even a few bites of a pancake, but that is all we could get him to eat all day.

We had a very restful afternoon as he mostly played the video game. He was in a lot of pain by this evening even though they've been giving him the Loratab so they gave him some more morphine. When he gets in that much pain he becomes uncommunicative and uncooperative which makes it very hard for us and the nurses to help him feel better. He's feeling better enough now to play the video game again, but says it hurts too much for him to get up out of bed. Tomorrow I'll be talking with the doctors to try to get a better pain management plan for him.

November 15, 2008 -- Update on Jesse

Jesse's 2nd degree burns are beginning to heal. The doctors have told us that they now want to do the grafts late next week, Thursday or Friday. 5 days after the grafts they will see how they are doing and if all is well we could go home a couple of days later. That will put us home possibly before Thanksgiving.

They are looking at grafting 3 areas: both sides of his abdomen from below his belly button to a few inches above his nipple on the left side, and a couple of inches below his nipple on the right side, plus the top of his left shoulder. They will cut a very thin layer of skin--a strip about 4 to 5 inches wide--from the front of both thighs, which will be used for the grafts. They tell me that usually the thighs will hurt worse than the burns for a few days. They use a machine to spread and stretch the skin from the graft so that a little bit of skin can cover a much larger burned area.

He is being fed through a nose tube because he feels so bad that he won't eat much. This is common in burn victims I am told, but he HATES that nose tube. They took him off the constant morphine drip he had for the last 7 days, and are giving him Loratab for pain. This is not controlling the pain very well so tonight they gave him some more morphine. We hope tomorrow that they will make some changes because he hurts so he doesn't want to walk. It is worrisome because if he doesn't get moving there is a very real possibility that he will get pneumonia. Also they say that if he is not comfortably walking before the skin grafts he will have a terrible time walking once the grafts are done.

On the whole, he is feeling a lot better than he did for the first five days. He sat up most of the day today playing "Call of Duty" on the Playstation 2 the hospital has loaned us, then he listened for more than an hour while I read Harry Potter to him. He also beat both me and my Mom at chess! Day before yesterday he ambushed a male nurse, shooting him with a foam dart from his new gun. It was so good to see him laugh!

For those who didn't know, my Mom flew in from Florida the day after the accident happened. She stayed here in the hospital with us and has been an incredible help. I don't think I could have managed without her. She goes back home on November 20.

November 12, 2008 -- from LeBonheur Children's Medical Center

The accident happened November 6, 2008. A friend was burning some things in the drum that we use for burning, when it flared and whooshed over Jesse. He was air-lifted to LeBonheur Children's Medical Center in Memphis (which is about 45 miles from our house.) He is in room 7419.

He is burned over 18% of his body, some 1st degree but a large part 2nd degree and 3rd. The white areas in the photos are very deep 2nd or 3rd degree burns which will require the skin grafts. The dark pink/red areas are 2nd degree that are healing slowly. These photos were taken 5 days after the accident so most of the 1st degree burns are already healed and gone. The center of his chest was 1st degree. His gums got burned somehow (his mouth must have been open when the whoosh happened), and both ear lobes were 2nd degree, but his face, miraculously, was not burned.

We found out today that they will do skin grafts early next week, probably Tuesday. (The grafts will come from the front of his thighs.) Then 5 days later they will remove the bandages and depending on how well the grafts "take" we may be able to go home after a day or 2 more. Jesse will then have 2 weeks recuperation at home before he begins physical therapy so that he doesn't lose mobility in his torso, neck and arms from the scars. The therapy is expected to continue for about 2 years.