Day 57: May 31, 2012

Dallas has been improving every day.  He is getting around much better, though we still walk beside him (or behind him) to make sure we are there just in case he falls.

Over the weekend, Dallas painted his mask.  He was quite scared of it, so Travis helped him to paint it in a camouflage look.  They had a lot of fun painting it together, and it seemed to relieve some of Dallas' fears about it.


Mac wanted to do the same thing, so Donna cut out a cardboard mask for him and Travis and Dallas helped Mac paint it.


The boys then wore their masks together for a little while.

Dallas is supposed to wear his mask all day long, every day, only taking it off to eat and shower.  This is NOT working out very well.


Dana, his Occupational Therapist who made the mask said that he could work up to wearing it for this amount of time, but it seems to have loosened even more, since more swelling has went down, and doesn't fit him properly.  It will have to be adjusted when we go back for clinic visits.

Dallas went to physical and occupational therapy today.  His therapy is a little more than 30 minutes away; then therapy was about an hour and a half.  So it took right at three hours today for therapy.  Dallas was pretty reserved at first, he didn't want to do any of the therapy, he only wanted to sleep; but after 10 minutes or so, he really opened up and had a good time.  He seemed to impress them with what he was able to do; but they said he still has a long ways to go.


Dallas went on the swing, played with balls, rode a bike, walked up and down stairs, and bounced.  He did great.  We did give him a half dose of his Oxycodone, since it was going to be intense.  It seemed to help him; but caused him to itch tremendously.


They will be scheduling more PT and OT for next week, looking at 3 times a week; at least for the first year.


Dallas has clinic Monday; so Travis and I will be going to NC Friday evening.  Saturday, we will be taking Dallas to the Golf Benefit, at least for a little while.  We think it will be good for Dallas to get out, but also for everyone to see how much he is improving, and to see what their donations are giving.


Sunday, I think we will do a party for Mac, since his birthday is Monday.  Perhaps just a cook out, something enjoyable for him; but something Dallas could also attend without getting too exhausted.  Hopefully all will go well this weekend, at the Golf Benefit, Mac's Bday, and the clinic visit.


Please continue to think about Dallas!  Even though he is out of the hospital, Dallas still has a very long road ahead of him.

Day 52: May 26, 2012

Day 52                                                                                                 Written May 26, 2012 6:52pm

Dallas was released on Friday.  We went from the hospital to Travis' parents house.  Saturday, we had a cook out for Dallas.  He did really well and had fun.  It was difficult for him to do things like take a bath and walk around, but he continues to get better each day.  

We got home Sunday evening.  Dallas was ready to come home!  It was great to be back, and we think it will really help with his recovery.

This morning, Dallas looked at himself in the mirror before taking a bath.  This was the first true look he got at himself.  He screamed and started shaking, saying over and over "I look so scary".  it was one of the most heartbreaking moments in my life.  But we talked to Dallas for about thirty minutes, and he was alright.  He still has many reservations about the way he looks, but we keep telling him how much he's improving.  

He's been wearing his mask more each day, which is great!  It is supposed to help with the scaring.  He is beginning to get tough scars on his face, so hopefully this mask will help smooth it out.  

Dallas is still very irritable at times.  I think it's the combination of medication, along with the anger he has over the events that have happened.  

Dallas has begun walking on his own, but we still walk behind him, as he is still wobbly.  

I will continue to update each day.  I am going to be very busy over the next few days, so it may be spurts of information.  I will also put more pictures up in the next day or so.  

Thank you all for your support, your prayers, and everything you are doing!  It has not gone unnoticed, and is much appreciated!  

Day 49: May 25, 2012

Day 49                                                                                                 Written May 25, 2012 11:52pm



Dallas was released from the hospital.  More info to come!

Day 48: May 24, 2012

Day 48                                                                                                 Written May 24, 2012 8:52pm

Dallas did alright last night.  Travis kept him up until around 1am so Dallas would sleep in, since his sedation was schedule for 2pm, and we didn't want him waking up, not being able to eat or drink anything for hours.  Luckily, Travis' plan worked.  Dallas didn't get up this morning, and slept until it was time to go.

The anestheologist came in around noon and said that they were ready to go.  So they were going to get in touch with the doctors and see when they would be ready.  We went upstairs to the sedation room around 12:45pm.  The doctors weren't in yet, the occupational therapist was there.  Shortly thereafter, the resident doctor came in, and they gave him his medicines to get him to sleep.  It was much scarier this time, knowing that there wouldn't be an airway, that they only had a face mask to use for him.  I was terrified that he wouldn't be able to breathe properly.  Fortunately, he did just fine.  Dallas was in there a little over an hour.  They took his pick line out and put in a peripheral line in his foot, took the feeding tube out, made the mold for the face mask, took the remaining staple out, and did silver nitrate to the areas that needed it.  Dr. Zeller said she was pleased the way things were progressing, but he will definitely need more grafting on his right arm. 

Shortly thereafter, Dallas was brought back to his room and was awake.  He was in such a bad mood, very emotional, crying for his Daddy, wanting his Daddy to be in bed with him, to lay with him.  So Travis got him bed with him, and Dallas curled up to him and went to sleep.

Dallas wanted Sweet and Sour chicken for lunch, so that's what he had, again.  He ate about 1/2 of the chicken.

He's been playing games with Travis, walking to the bathroom (with support), and getting back to being Dallas.

There are some rough times, however.  There have been many times today when Dallas' skin got stuck to the blanket (due to some of the raw areas).  The IV in his foot has gotten caught on the blanket, causing it to pull and hurting him pretty badly.  He now has to take all his medications by mouth, which include Methadone twice a day, Adavan twice a day, Zantac 4 times a day, Zyrtec once a day, Vitamin C once a day, Zinc once a day, Attarex 4 times a day, and a multivitamin.  As well as a Klonodine patch that has to be changed weekly.  That is a lot of medicine to take in a 24 hour period, especially for a 5 year old child.  And all of these medicines have a very bitter taste (except the Vitamin C, which has a sugary strawberry water taste).  Dallas really hates taking all of these.  This will also be difficult, seeing that his Methadone has to be given at midnight and 6am (as well as noon and 6 pm), his Adavan has to be given at 3am (and 9am, 3pm, and 9pm), and his Attarex has to be given at 3am (and 9am, 3pm, and 9pm).  So Dallas will have to be woken up at midnight and again at 3am and at 6am.  This will be very trying for all of us.

They are weaning Dallas' Adavan.  They are hoping that in the next 10 days or so he will be completely off of it.  They will also have to wean the Methadone and Klonodine patch.  Dr. Zeller said that since he will have to have his right arm grafted more in a month or so, she is going to leave the Methadone levels where they are, and then afterwards, begin the weaning process.  Once the Adavan is weaned off, we will begin weaning him off the Klonodine.

Dallas ate the rest of his sweet and sour chicken for dinner, along with some shrimp teryaki with Travis.

He continues to be extremely itching, so hopefully the new cream (Elta) they gave him will help with that; though so far, it hasn't helped much.  They have also put a compression type dressing on, called TubaGrip.  That has seemed to help a little on his torso, leg, and arm, but his face is what itches the most.  So maybe, once he receives his mask, it will relieve some of the itching.

We still aren't sure when he will get out.  Sometime within the next few days is what we are hoping for, but there hasn't been anything set in stone.  They are monitoring his vitals, as well as seeing how he is doing with his medications, and nutrition.  So if all goes well, it should be very soon.  When we asked Dallas if he wanted to go home, if he was ready to get back, he said no.  He told us he didn't want to leave for 50 more days.  When we asked him why, he said it was because people come to visit him here.  How sad is that?  He's getting more used to the idea of going home though, and I think once he gets there, he will be much happier and will progress faster.

Even though Dallas is getting better, he still needs everyone's prayers.  Dallas has such a long road of recovery ahead of him, years worth of surgeries, physical therapy, occupational therapy, sun protection, etc.  Please think about him, and thank you all for your continued thoughts, prayers, help and support!  It has not gone unnoticed, and is certainly appreciated!   

Day 47: May 23, 2012

Day 47                                                                                                 Written May 23, 2012 10:58pm

Dallas had a restless night again.  It seems to be hit or miss with his level of comfort while sleeping.  When he woke up, he did well.  Ate some breakfast, played the game with Daddy, typical things he's done over the last few days.

The soldier, Steven, who came in to see him the other day, came to visit him again today.  This time, he was dressed in his uniform, and brought Dallas a teddy bear and a 40mm round.  Dallas was so excited to see him.  He also played the Xbox with him for a while.  It was a good uplift for him, since he wants to be a soldier.  And now, Dallas says he wants to be a soldier doctor, since he is doing his own bandage changes (for the most part); he says he wants to help the other soldiers while he's a soldier.  That would be wonderful!

Dallas' PT went well today.  He went out to the main hall/waiting area (with his Daddy and Steven) and Elizabeth, his physical therapist, set up Twister for him.  He played Twister with them, played bowling with them, and then went back to the room (by that point, he was exhausted).

Also, every time Dallas has to use the bathroom, he now walks there (with some support).  He is getting more and more motivated to get out of here.

He is scheduled for 2pm for the sedation suite tomorrow.  There, they will fit him for his face mask, use the silver nitrate on the areas where granulated tissues are forming, remove the other staple that was left from surgery, take out his feeding tube, and possibly, remove his pick line.  If all goes well, it should take about 2-3 hours, and he will be tube/IV-free!  They will then watch him for 24-48 hours and decide if he's ready to go home.

Dallas ate a good amount of lunch today, an adult plate of Sweet and Sour Chicken (no rice).  So his appetite is back, and he's eating well!  This is one of the biggest steps towards being discharged.  They want to ensure his nutrition is up, and back to normal, before releasing him; and it's almost there!

Mac came to visit Dallas today.  As soon as he walked in, Dallas' eyes lit up and you could tell he was so excited!  They played video games together and watched cartoons.  When they sat together, Mac stayed far to the right of him.  You can tell he's still scared of hurting him, but also scared of him.  Dallas tried giving Mac a hug and kiss, and Mac pulled away; Dallas tried so hard to pull him close, but Mac kept pulling away, with a fear in his eyes.  Seeing that is extremely difficult.  Two brothers who are so close, best friends... are now seperated, and one is scared of the other.  We hope that Dallas doesn't realize this, that he doesn't notice Mac's fear, but we think he does see it, unfortunately.  

Dallas had another bath tonight.  Overall, it went well.  While waiting for the water to warm, he was bouncing up and down, excited to get in, and hit his (grafted) knee on the outside of the tub; he instantly screamed out in pain and it started bleeding a little.  It was terrible seeing that happen to him.  But, he counted out the pain, didn't cause any damage to the graft (that we could see), and got in the tub.  Once he got in the tub, he let his Xeroform soak so that it would fall off, rather than have to be pulled off.  He took them all off (on his arm, his side, his leg) and I took the ones off his back, then he began washing his body.

Getting out of the tub scared me.  Once he was out, we saw MAJOR discoloration in his right leg (where the graft is), and in his donor areas on the left and right leg.  PT said that standing could cause discoloration, but seeing it purple was pretty freightful.  Things like that is what scares me about going home.  But after getting him back into the bed to relax, the purple began to subside.  We got the dressings back on, and he and Daddy laid in bed and watched cartoons together.

We are trying to keep Dallas up tonight so that he will sleep most of the day tomorrow.  He will not be allowed to have anything to eat or drink after 4am, since he will be sedated at 2pm.  It doesn't make much sense for them to schedule him so late in the day; refusing food and drink to a five year old.  How do you really explain to him that he can't having anything to eat or drink?  It's going to be so hard on him; so the goal is to have him sleep as much as possible tomorrow morning.

Please continue to think about Dallas and pray that all goes well tomorrow. 

Day 46: May 22, 2012

Day 46                                                                                                 Written May 22, 2012 11:48pm

Dallas had a good night.  He didn't wake up much at all.  I think last night was the first night, in a month and a half, where he actually slept.  He woke up bright and early ready for the day; and of course, wanting Daddy to lay with him (since I slept in the bed with him last night, and Daddy is usually the one to sleep next to him).  So Travis laid with him for a while. 

It was a good day for the most part.  Dallas ate some breakfast, a fruit cup and some apple juice. 

We didn't do his dressing change in the morning, like we usually do, because he was going to the bath/whirlpool tub today.  They said that we could let him get in the bath with the dressings on, so they would soak and fall off easily.  So we just hung out here, playing games, watching television, and having a nice time. 

PT wanted to come in to work with him earlier today.  Didn't make much sense to us for them to have him walk, do obstacles, and exert so much energy at noon when he wanted to walk to the tenth floor for his bath.  So we had them integrate it all together; otherwise, he would have been too tired to have his bath at 3pm.  So around 2pm, PT came in.  He walked all the way to the elevators and up to the 10th floor.  PT then had him do some different activities.  Afterwards, he was able to go to his bath.

Dallas had some reservations about going to the bath.  When we got to the 10th floor, Dallas started getting scared.  We think he began having flashbacks, remembering what happened up there.  It was really sad.  When we took him into the "tank room" (what they call it), he got even more scared.  He didn't want to take the bath at first.  But after feeling the water, he eventually got in.  He loved it.  The nurse was washing some of the dead tissue off, and he helped her.  It looked so painful, rubbing his skin like that, but it didn't seem to bother him.  He didn't want to get out!  So it was a good experience for him, and I am sure that when he returns home, bathtime won't be a scary situation for him now.  

After the bath, Dallas rode in the bear chair back to the room.  He ate a little bit of lunch.  And he relaxed. 

Dallas also ate a plate of spaghetti for dinner.  His nurse last night, Jobe, is one he really likes; his only male nurse.  He wanted Jobe to play the game with him, so he ate all his spaghetti. 

Dallas fell asleep relatively early, so Donna and Kiana stayed the night with Dallas.  Travis and I went back to the Ronald McDonald house to get a good nights rest. 

My mom is supposed to be brining Mac tomorrow to see him and spend time with Dallas and the rest of us.  Hopefully Dalals and Mac will be able to go to the playroom, or do something fun together tomorrow. 

Here's for hoping Dallas has a good nights sleep. 

Day 45: May 21, 2012

Day 45                                                                                                 Written May 21, 2012 9:15pm

Travis said that Dallas did pretty well overnight.  He slept so much yesterday that he didn't want to sleep last night, but overall it was ok.  Dallas ate a lot for breakfast this morning.  Almost 2 full pancakes, some bacon and eggs!  The bad thing is, once he was given all his medicines this morning, he threw most of it back up.

Dallas also did very well with his dressing change again today.  No crying, but very scared again.  He said his leg scares him so much.  So this is something we will have to talk to him about on a regular basis. 

His itching continues to get worse. 

Travis and Donna said that Dallas did PT today; he went to the 8th floor playroom.  From what I heard, he did very well and had a good time.  That's great!  Getting some more normalcy back into his life. 

When I got back, Dallas was drinking a high calorie/protien juice drink.  The resident doctor also came in and said that they have the sedation room set up for Thursday to get him fitted for his mask and do the silver nitrate where necessary.  They might also take out his tube and pick line then, but they aren't sure yet. 

Tomorrow Dallas gets to go to the whirlpool tub to get a bath!  They said that since his wounds are healing, it would be ok to get in now.  This will also wash away the dead skin and should help with his itching, at least a little. 

They are cutting Dallas' tube feeds back to 40mL/h tonight, and if his nutrition looks good, they may cut back again tomorrow night or the next.  The goal is to have him down to around 20mL/h before shutting it off completely.  

No fevers today.  However, Dallas has been very clamy the last few days.  We aren't sure if that's from his body trying to regulate his temperature, and his skin compensating for the damaged areas, or what it is.  So it is something we will speak to the doctors about. 

The more Dallas gets out and around, the more I have noticed that people, kids and adults alike, look at Dallas in a shocked way.  I know that most people don't mean it, it's a natrual reaction, but I pray that it isn't something that is going to affect Dallas' reaction about himself.  The bad thing is, I think he's already began to notice those looks.  He has said numerous times that he's not handsome.  We reassure him that he is, but he seems to have a negative self image right now.  Perhaps some psychological therapy would do him some good; maybe they can talk to him from a different perspective?  There was a psychologist coming in here, talking to him on almost a daily basis, but she hasn't been by in a while.  Perhaps it's because Dallas didn't pay any attention when she was speaking?  I don't know.  I just know that we need to ensure that he doesn't feel that he is ugly or not good enough because of what has happened to him. 

On another note, Dallas didn't eat any dinner tonight.  He said he wanted sweet and sour chicken, yes, again.  He had a chocolate milkshake and now he's saying he isn't hungry, so we'll wait till tomorrow to see if he still wants some. 

Dallas didn't have a nap today, so he should sleep good tonight.   

Day 44: May 20, 2012

Day 44                                                                                                 Written May 20, 2012 11:09pm

Dallas did ok last night.  He woke up pretty early, ready to play the game.  I had to go to WV to pick Kiana up, so I wasn't there today.

Dallas threw up his medicine again.  They give him about 7 different things at once, so it seems to be upsetting his stomach. 

Travis said that Dallas' dressing change went well, that he didn't cry, but he got scared when he saw his leg.  So he had to talk to him and calm him down. 

Also, he had a few visitors, but slept through most of the visit.  Travis said that Dallas slept almost all day long, finally waking around 6 or 7pm. 

Physical therapy didn't come in, but he was sleeping, so it wouldn't have mattered too much anyways. 

Occupational therapy also didn't come by, but again, he was sleeping.

He stayed up for a while at night, playing the game with his Daddy. 

He didn't eat much throughout the day, but for dinner, he wanted Sweet and Sour Chicken again, so they got it for him.  Travis said he ate about 3/4 of the meal!  That's great!

No fevers again today, YAY! 

I hope he gets a good nights rest, his body needs plenty of rest for his healing and recovery! 

Day 43: May 19, 2012

Day 43                                                                                                  Written May 19, 2012 8:09pm

Dallas had a restful night.  He woke up in the middle of the night wanting to play the game, but went back to sleep.  He finally got up a little after 6am.  Dallas' main complaint now is itching, it is getting completely uncontrollable.   

Around 9am, the nurse gave him Vitamin C, Zinc, his Atarex, Zantac, and Adavan, not five minutes after that, he began throwing up; so all his medicine didn't even have a chance to be absorbed.  He really needed his Atarex (itcy medicine) and Adavan (the medicine used to wean him off the Versed).  Hopefully he won't itch too terribly bad. 

 Dallas' dressing change was another difficult one.  The worst part is him anticipating the pain.  He ends up screaming in terror, shaking, etc.  But, even though it's so scary for him, he is healing more and more with each change.  His donor sites are looking so much better, some little areas are already healed; however, there are still a large portion of areas continuing to heal.  His grafted areas look ok.  There are portions where granulated tissue is forming, but other areas that are healing very nicely.  After Dallas' dressing change, he wanted to walk to use the bathroom!  A wonderful step towards recovery. 

Shortly after the dressing change, PT came in to work with Dallas.  His therapist wanted to take him to the 7th floor to look at the train and large screen projector.  We were going to have him walk to the bear chair, then wheel him to the elevator, and once we got there, let him walk around.  Dallas had other plans; he wanted to walk all the way to the elevator, so we did that, then he walked from the elevator to the projection screen and watched the different videos playing.  After that, he walked to the train, turned the switches on, and watched it for a little while, then turned it back off.  He was pretty tired by that point, so he walked to the bear chair, and was wheeled from that point on.  The walking was supported (mostly), but he did much better than yesterday.

Gregg came up here again today.  Dallas wanted a chicken nugget happy meal, so he picked one up for him.  Dallas ate all but one chickn nugget and drank two cups of apple juice!  Such an improvement.  After Dallas finished eating, he took a nap, falling asleep next to daddy.  He is getting some much needed rest, he wore himself out this afternoon.    

The doctors said that they would be taking Dallas to the sedation room early next week so that his face mask can be made.  At that time, they will also do the silver nitrate to the granulated areas on his body, and possibly a few on his face (near his ears).  It'll be easier for them to do that while he is already asleep, rather than putting him through even more pain and trauma. 

Since they are talking about letting him possibly go home next week, I will be going to get the house ready for his return, and will bring Kiana back with me Monday. 

Day 42: May 18, 2012

Day 42                                                                                                  Written May 18, 2012 7:00pm

Dallas didn't have a good night at all.  Travis laid in bed with him throughout the night, but Dallas was so extremely itchy that he didn't get any sleep at all.  He slept maybe two hours total over the night.  That also meant that Travis didn't get any sleep.  

Also, last night the doctors came in and told us his hemoglobin levels were low again, dropping to around a 6.9.  So they wanted to give him a blood transfusion again.  This time, he would have to get another unit of blood; this makes 12 units to date.  The doctors aren't even sure if this will be enough, or if he will need more in the future.  It begins to get more and more frustrating.  Dallas accepted the blood pretty well, however, and seemed to be a little less lethargic.  

This morning, Dallas ate a few bites of applesauce, and about 10 fruit loops for breakfast.  He drank a little apple juice as well.  Yesterday, the nutritionist told me that what he had eaten the day before accounted for 50% of his caloric needs and 76% of his protein needs, so hopefully he will continue to do better and better with eating.  
The doctors have advised us that they would cut back on his feeds again tonight, going back to 50mL/h.  Maybe this will help allow him to get hungry.

Dallas' dressing change was more traumatic this time than it has been in a long time.  Dr. Zeller came in with some of her residents so they could take off the remainder of the Aquacel and so that she could see the areas of concern.  During this dressing change, we have noticed more and more granulated tissue forming, which is a major concern to us.  She treated a few areas with the silver nitrate, which seemed to hurt him pretty badly.  The doctor and residents said that it may be uncomfortable, but when they applied it to those areas, he screamed out in complete pain.  He started jerking around and it hurt so much in some areas, that he couldn't breathe.  It was one of the most painful things for us to see, knowing there's not much we could do.  I just wanted to hug him and tell him it would be alright, but I couldn't, there was no wrapping my arms around him, there was no kissing his boo boos.  We had to sit there and try and talk him into being calm.  Taking off the Aquacel was another hard thing for him.  There were areas that were still stuck to his donor sites, so when they were pulled in those areas, he began bleeding.  Once he saw the blood, he flipped out again.  He said he was scared of the blood, and had this look of terror on his face.  He did manage to take off a few areas of the Aquacel on his own, calming him down somewhat.  This dressing change ended up taking about an hour and a half due to the extent of it, not a very good experience for him.  However, on the bright side, once we were ready to put on the white bandages (Kerlix), he was so excited that he started to dance.  :) 

Once we finished his dressing change, we asked Dallas if he wanted to wear boxers.  He was so excited and had the biggest smile on his face.  So we put them on him.  We also put new socks on him.  We think that giving him some normalcy back will help with his recovery and his will and strength.  

After his dressing change, Dallas did physical therapy.  He wanted to walk to the playroom, so we put some shoes on him, and he started to walk.  Dallas wasn't able to make it to the play room, his ankles started hurting very badly, as well as he was getting very lethargic and shaky.  So he walked back to the room, but overall, this was still a great accomplishment, as it took a lot of strength to get around like he did.  

My mom brought Mac to visit Dallas.  He was alseep when they got here, so Mac played with Legos, and visited with us for a while.  I know it's so confusing for him, to not understand why he can't go home, to not understand why he can't stay with his Mommy and Daddy and stay with his brother.  We are trying to spend as much time with him as we can, and trying to get him to understand everything, but it's just so confusing for him.  Thankfully, we have had help with him and Kiana, otherwise, it would have been so much harder on all of us.  

The nurse took Dallas' vitals not long ago, and his temperature was 101.3.  I am beginning to wonder if there will be a day when he doesn't run a fever at some point or another.  If a spike in fever is going to prevent or delay him going home, we're never going to leave this place.  

Dallas said he wanted spaghetti for lunch, since he didn't eat it for dinner.  So I went to cook it, and by the time I got back, he was sleeping.  He slept from 1pm to 6pm, so I'm sure he will be awake most of the night.  When he woke up, he ate a Spaghetti kids cusine and drank tea and mixed berry juice.  After that, he played some games with daddy, and he will be resting soon.  Hopefully he will get a good nights rest. 

Day 41: May 17, 2012

Day 41                                                                                                  Written May 17, 2012 5:11pm

Dallas slept pretty well overall.  Travis slept in bed with him all night; every time he would move, Dallas would move.  But at least they got some rest.  The doctors also lowered Dallas' feeds last night, running from 8pm to 6am at 75mL/h.  Their hopes are to get Dallas to eat even more throughout the day.

Dallas had some applesauce for breakfast.  He has also had a good appetite, eating milkshakes, having lots of chocolate milk and applejuice, and a few odds and ends. 

Dallas' dressing change didn't go too terribly well.  Michelle, one of the resident doctors, came in to take some of the Aquacel off his leg.  He did not enjoy this very much.  He was very helpful, however.  I think the anticipation of his pain is worse than anything.  So rather than him kicking and screaming, we let him take his bandages off.  This usually calms Dallas, and it did mostly, but when he pulled the Xeroform off his leg, it was quite traumatic.  He saw his right leg and said "Holy cow!  Look at my leg, it looks so scary!" We had to talk to him for about 20minutes to calm him down so that he would continue with the rest of the dressing change.  It's so hard seeing your child fearful of himself.  But we assured him that it was getting better, and that it will take time, but soon it will be healed.  There is something that is concering us, which are a few spots on his shoulder, and back, where there are really large areas that look like blisters.  Michelle said they were granulated tissues, where his body is trying to heal too fast, and it's causing hard tissues to form; she referred to it as hypotrophic scarring.  She said that they could use silver nitrate to cautarize the areas, so we have a million quesitons about that. 

After Dallas' dressing change, he did physical therapy.  Dallas walked all the way to the playroom, which is a good distance from the room.  He stopped quite a few times, twisting his ankle once, but it wasn't anything too bad.  So he continued walking.  Once we got to the playroom, he sat down and played with a bunch of different toys.  I went to get the bear chair and when I got back, Dallas was sitting in his daddy's arms, crying.  Come to find out, he fell.  The physical therapist wasn't guarding him like she was supposed to be, and he thought Travis had put a chair behind him, so he ended up falling.  My first thoughts were, "is he ok" and "did he hurt his grafts"?  The doctors have told us that he can still, and will for a while, very easily be able to shear his grafts.  There doesn't appear to be any collection of blood, so we can only hope nothing has been affected.  Rather than being pushed back to the room in the bear chair, Dallas wanted to walk, so that he did.  He did really well, so we are pleased. 

Dallas and Travis played the game for a while.  Travis said something, I can't remember what it was, but Dallas all of a sudden said, "That was so freaking funny".  We all burst out laughing.  Then, he said something again and Dallas said "Dad, that was classic".  It's great to see that side of Dallas coming out again. 

But then, Dallas says other things that really make you sad, like when we told him that if he would eat more, they would take his feeding tube out.  Rather than him being happy about that, he has become accustomed to the tube, and said "I will NEVER eat again, they are NOT taking my tube out".  Another thing was when he asked how many more dressing changes he had to do, and we told him just for a little while longer, and he broke down crying saying "But you said only five, then four, then three, then two, then one, now none".  He couldn't understand that this is just a little while longer. 

Hopefully things will go better throughout the rest of the evening, and he will eat some dinner (he asked for spaghetti). 

Day 40: May 16, 2012

Day 40                                                                                                  Written May 16, 2012 7:27pm

Dallas had a pretty good night, slept fairly well.  His temperature went up to 101.6 overnight, but gradually decreased.  They ran his feeds until about 7am, and shortly thereafter, Dallas woke up.  He had a few bites of applesauce for breakfast.  

Around 10am, we did Dallas' dressing change.  It seems like they are getting harder, emotionally, for Dallas.  He continues to anticipate pain, which makes it so much worse than it actually is.  This time, we had him take off as many bandages as he could do himself, which actually calmed him.  From here on out, we well definitely allow him to take a more active part in his dressings.  There was a spot that the occupational therapist was worried about, she said it looked like it could be an infection, so she passed that info along to the doctors.  

After Dallas' dressing change, the therapy dog came in to see Dallas.  He was so excited to see Cree.  She layed in the bed with him and he rubbed her.  He loved it, until she scratched his hand.  I think what happened was that her nail barely scraped his hand, but because his burned areas are extremely sensitive, it felt worse than it actually was (and his hand, the palm where she scratched, is all the way healed).  Once that happened, he began crying and said "Get out of my bed" to the dog, so it was a good visit up until that point.

Gregg brought Mac up here to see Dallas today.  He was so happy to see Mac!  They layed in bed together, played legos, played the game, and talked.  Mac seems to be handling this very well, all things considered.  They stayed up here for a few hours, which was great for all of us.  

Around 3pm, the resident doctor came in to check out the spot on Dallas' leg that they were concerned with.  There is a bandage on some of his donor sites called Aquacel.  Aquacel is an antimicrobial dressing with silver in it.  If the Aquacel gets wet, then it could develop an infection on it, thereby releasing an infection to Dallas' healthy and healing areas.  The doctors are concerned that this possible infection could be the reason for Dallas' spike in fevers.  So she came in and took some of it off, and we had to rebandage his leg.

After that, Dallas did physical therapy.  He walked from his bed, all the way to the nurses station.  There is a concern with Dallas' left foot, as his ankle is twisted out to the side, causing him to apply pressure in areas that shouldn't have pressure.  Tomorrow, we are going to go out to get Dallas some shoes to see if it helps with pressure support.  Dallas also climbed out of the bed with some assistance, which is a very big step for him.  

Dallas wanted sweet and sour chicken for dinner, so we went out and got him some.  He said he was going to eat eleven.  He ended up eating five pieces, but that was great!  So much more than he's eaten over the past month.  He also had a glass of sweet tea and a glass of lemonade!  

The nurse started Dallas' feeds back at 8pm.  They are going to run it all night, and the goal is to give him 75% of his caloric intake overnight.  

Earlier it was so cute; the nurse put the pulsox on Dallas' toe to get his oxygen reading.  Travis and Dallas were playing the Xbox and the reading went down to 81, and immediately started beeping.  Dallas said, "Please go out there and tell them I'm breathing!"  He was so upset that it kept beeping and he knew he was breathing ok.  So they turned it off for now, since all they really needed it for was his vitals anyway.  

We hope Dallas gets another good night of rest, and begins eating more tomorrow!  
   

Day 39: May 15, 2012

Day 39                                                                                                  Written May 15, 2012 7:43pm

Dallas didn't go to sleep until after 3am, Donna stayed up with him all night with him to make sure he didn't start scratching his face or other areas.  This morning, they wanted to have him start taking his medications by mouth, rather than through his tube.  So the nurse gave him his vitamin and had him drink some vitamin C, they also gave him his Addarex (the itchy medicine) through his tube.  About 5 minutes after taking it, he threw it all up.  They also cut Dallas' feeds off, going to give him nocturnal feeds only, so hopefully, he will begin to get hungry again and start eating more. 

We did his dressing change this morning.  It's easier than before, requiring only Xeroform and Kerlix; however, there are spots that still get stuck and end up bleeding after pulling them off.  Dallas didn't do well during this dressing change, most of it was the anticipation of the pain, but there were definitley some spots that did hurt him.
Some of the areas looked better than I expected, but others looked worse.  You could see the spots that didn't take on his arm, but there is a chance that it could still heal without future grafting.  There is also a spot on his right arm in the crease of the elbow where his own skin grew back and didn't require grafting.  That's a great thing!  

After Dallas' dressing change, we had him stand on the scale to get his weight, and then he walked over to the potty (with a little assistance), and then back to his bed.  He was on his feet at least 15 minutes.  Shortly thereafter, he decided to take a nap.

The doctors advised us that we could move to a floor room if we felt comfortable with caring for Dallas.  Well, we've been doing everything for him (besides giving him his medicine) for the last month, so I'm pretty sure we could handle it.  We should know in a few hours what room he will be in.

During his nap, we realized that he was very hot to the touch, we also noticed that he was beginning to get shaky again.  We decided to take his temperature and it was at 103.9.  After notifying the nurses, they gave him some motrin and called the doctors to see what they wanted to do.  About 30 minutes later, they came in to do blood cultures, and gave him tylenol as well.  In the mean time, we put cool washcloths on his head, arm, and legs; this should help to cool him down.  I found out that his Methadone and Adavan were given later than scheduled, throwing his dosing schedule off; so hopefully it's just a result of a late dose.  A couple hours later, Dallas' fever went to 100.2.  

The nurse came in and told us Dallas' hemoglobin levels were down to 5.  She thinks it's a wrong read, because he looks ok.  We are weary of this, considering the last time he dropped to a 6something, he looked ok and was moving, etc.  There are cultures scheduled for in the morning, so they said unless Dallas begins to show signs of being lethargic or begin to get worse, they will wait until then to take another set of cultures.    

They moved Dallas this afternoon to a new room.  This room is more spacious, and less intrusive, so Dallas will be more comfortable.  Hopefully this will also help with Dallas feeling more like himself.    

Dallas has eaten a little throughout the day.  Some applesauce, icecream, some sprite, a milkshake.  We are hoping that he will continue to eat more with each day and will have the feeding tube out soon.  

Physical Therapy wasn't too intensive this afternoon.  I think partly because he had such a high fever, and the fact that he had already done so much earlier.  So the therapist stretched out his arms and legs, loosening him up.  

Dallas and Travis got to play the Xbox today.  That brought such a big smile to his face!  It was great to see his eyes light up like that again!  

Also, we had a meal brought in to us by Diane and Larry Kirby.  It was so nice to have a meal other than cafeteria food.  It was wonderful, and we really appreciated it!  

Hopefully Dallas will get a good nights rest and be ready to eat in the morning.  Please keep him in your thoughts and prayers.  

Day 38: May 14, 2012

Day 38                                                                                                Written May 14, 2012  6:14pm

They moved Dallas to High Acuity yesterday and he did well.  He was able to get some rest last night, though the itching has gotten worse.  It's hard to try and keep him from scratching or touching his face.

At 6am, the doctors came up to get Dallas to take him to the OR.  They didn't give him his Versed until the last minute, so by the time he was transported downstairs, he was aware of what was happening.  When they were ready to take him back, he got very irritated and started crying and saying he wanted Mommy and Daddy to stay with him.  So the doctor
had to give him more medication to calm him.  It was amazing how hard he fought to stay awake, but eventually, he drifted off.  Talk about something pulling on your heart strings.  Dallas was begging for us to
stay with him.  But once he was unaware of what was about to happen,
they took him to the back.

The nurse called at 7:45am to tell us that they had gotten started. 
This is supposed to be a pretty simple proceedure, only taking roughly an hour and a half to two hours.  We are praying that everything has taken, and he will need no further grafting.  There are spots on his face that arent taking, they are peeling up.  But, Dr. Mullnar said he did overgraft and expected some of the areas to peel off after time.  Hopefully the ones we see that happening to, are the areas he expected.

Dr. Doud, one of Dallas' previous doctors, came to visit us.  She went to see Dallas in the OR and said he was looking great.  She advised us that a couple of spots on his arm looked like they didn't take, so Dr. Zeller would talk to us.

Dr. Zeller came out and spoke with us after surgery, around 10:00am.  She said that she was very happy with the results.  The grafts on his chest, back, leg, and neck took very well; there were a few spots on his arm that didn't take and would require a future surgery.  She wants to give it a few weeks to see how things progress, then possibly in a month or so, regraft in spots.  Dr. Zeller told us that she thinks Dallas will be released sometime next week.  He will have to be seen again about a week after release to check on how the grafts are healing, how PT is going, and when he would need to have his arm (if at all) touched up.  Once his nutrition goals are met and his mobility is better, they will be able to release him.

Dallas will have his feeds turned back on today and throughout the night, then will have them shut of during the day, so that he can start getting hungry and begin to eat on his own again.  They will be doing nocturnal feeds ony. 

PT will also be working with him pretty aggressively in order to get him mobile and regain his strenght.  
We will be doing dressing changes again for wound care, once a day.  This time, it should be MUCH easier.  It will only be xeroform (vaseline bandages) and kerlix (gauze).  The dressing changes will continue at home.  We will also have to finish weaning him off of his Methadone and Adavan once we get home.  They are hoping to have him almost completely weaned by the time we leave.

Dallas is doing good right now.  He took a nap a few hours after surgery and has yet to wake up.  We are hoping things continue to improve, and with the proper wound care, good nutritional habits, and aggressive therapy, Dallas will be back to himself in no time (hopefully).  

Day 37: May 13, 2012

Day 37                                                                                                 Written May 13, 2012 6:17PM

Dallas slept pretty good last night.  Travis and I took turns staying awake.  While I was sleeping, The nurse helped Travis and Dallas make me a picture.  When I woke up, I got to see a bumble bee with Dallas' foot being the body.  It was so awesome!  What a great surprise.  

The doctors have come in and so far, everything looks good.  He is scheduled to go into the OR at 7:00am.  They think it should only take about an hour and a half, to two hours; but, you never know.  We are praying that when he goes back in tomorrow, all the grafts will have took and we will be out of here soon. 

The doctors decided to move Dallas out of ICU and into High Acuity Care.  So we moved rooms.  When Travis told him what was going on, Dallas smiled and said, "YAY!  Now you can lay in bed with me because that bed is bigger".  It was adorable, the bed is the same one since being in the burn unit, but he doesn't realize that, I guess.  

Travis layed in bed with him this afternoon.  Dallas said "I'm getting super sad," when I asked why, he said "Because I really want daddy to lay beside me.  So Travis finally climbed up there with him.

Dallas has had some drinks and small amounts of food by mouth.  His feeds still aren't at goal, which is 75mL per hour.  They have lowered because h was getting too much fluids, causing him to swell.  So they are hoping that he will start taking more fluids and food by mouth.

Dallas did his Occupational and Physical therapy today.  He wasn't thrilled, but they didn't do much; waiting on the grafting to heal before doing anything strenous.  

He hasn't had a nap, and he's been pretty active, so he should sleep well tonight.  

Keep Dallas in your thoughts and Prayers, and think of him when he goes to surgery!

Day 36: May 12, 2012

Day 36                                                                                                   Written May 12, 2012 9:48pm

Dallas had a decent night, going to sleep around 3:30am.  Yesterday was his first day without having the wrist restraints on the entire day, which he really enjoyed that. 

Dr. Zeller came in this morning and said that he is looking good.  He will have to have another dressing change done because of throwing up.  It won't be that bad this time, however.  She also believes that he is going through withdrawl from the Diaulid, so she has increased his methadone. 

Dallas slept with his dog Mac got him, and won't let it off of his bed, it's so cute. 

He's been very calm today, besides having his dressing change and OT (Occupational Therapy) coming in to work with him. 

His feeds are back at normal, his vitals are all looking good, they even took the catheter out so he can use the bathroom on his own. 

One more day, and hell be back in the OR to find out if the grafts took.  The plastic surgeons continue to rave about how well his face looks. 

His itching has gotten even worse, so we have to keep an eye on his hands, to make sure he doesn't scratch and end up shearing his graft. 

Dallas has been overwhelmed today.  Between his dressing change, visitors, occupational and physical therapy, and the energy his body is exerting from healing, he is worn out; so he fell asleep about 6pm. 

Maybe he'll sleep until morning and get a good night's sleep.

Day 35: May 11, 2012

Day 35                                                                                                    Written May 11, 2012 8:08pm

Dallas slept much better last night, though I didn't get any sleep. Between his really low blood pressure and him not breating every breath on his own, I was pretty scared of falling asleep. There were a few times when he didn't sleep well, and he hallucinated a few times, but overall, he did very well. The hallucinations are concerning us and along with the tremmoring, it seems like he is going through withdrawl again.

Dallas was given Diaulid for pain, written for as needed once every hour. Well we found out that one of his nurses had given him 7 doses in a 12 hour period. What really bothered us was that she didn't mention to us she was going to give it to him, and she didn't even ask him if he was in pain. Dallas will tell you if he's in pain and needs medication, so all that happened was that he was getting heavy narcotics for nothing, building up his tolerance level even higher. So far, the doctors want to rule out other things, but we know it's withdrawl.

They did another X-ray, showing signs of clearing.  They did a dressing change for Dallas, also changing his linens. Dr. Zeller (his surgeon) said that he is looking very good; and Dr. Mullnar (plastic surgeon) said his face was looking better and better. They said this is one of the best grafts they had seen. His facial grafts are taking really well. Hopefully Monday will be better news (as that's when they are taking him back to the OR to make sure his grafts have taken).

Dallas had his ventilator taken out today. He was terrified, as they had to cut the tape off the tube to take it out. It went really well though, even though it did cause him a little pain.

He's been breathing well so far, nothing they are concerned about. His blood pressure has dropped even lower, down to 76/29. They are concerned about that, but they thought it could be the Precedix and Klonodine patch, since essentially, they do the same thing.

Over the last few hours, Dallas' blood pressure has raised, almost back to normal. He is doing really well since being taken off the ventilator.

Dallas asked to have some Jello. So the nurse brought in some Strawberry jello for him. He took a couple of bites and they started his feeds back. About 15 minutes later, he started throwing up. It got all over his chest and shoulder, so we are praying that it isn't going to infect the grafted areas.

He's been shaking even more as well as going from hot to cold. Dallas also has a very blank look on his face. I know he's going through withdrawl from the Diaulid he was given, especially since it wasn't needed.

We are hoping Dallas gets some rest tonight. Donna said she is going to stay with Dallas, so Travis and I will go back to the Ronald McDonald house for some rest.