Tuesday, March 31, 2009

Tuesday, March 31 (Surgery VIII)

Hello to all. Clay was calm before he went into surgery this morning. He really wanted some almond milk, but they did not want it on his stomach before surgery. He did get to wear his shades on his way to the O.R. He went to the O.R. at about 10:30 am and came out at approx. 1:30 pm. The doctors placed the Integra on his face & he came back to his room with a thick bandage all around his head (it does have holes in it for his eyes, nose, & mouth). He's a little swollen from the surgery. We are hoping the Integra adheres to his face within the next three weeks. If it has adhered, in three weeks, the doctors will place sheet grafts over the Integra. We have learned a lot about patience & waiting. :-) During this three week period, the doctors may perform surgery on Clay's left hand.
Clay slept all afternoon. During our last visit, he opened his eyes and motioned for us to take his covers off because he was hot. He also wanted almond milk again, but could not have it. We told him that he might get a chance to sip some tomorrow. We hope he has a restful night. We want to thank you all again. We love to read your comments that you post on the blog. We are so tired at the end of the day that we do not get a chance to respond to all of you. Please know that we are grateful for your kindness, thoughts, and prayers.

Monday, March 30, 2009

Monday, March 30th

Clay had a busy day. He was awake at 6:00 and we visited a little. At the 8:00 visit he tried a little juice to start his day. I tried to stretch his right hand and he was not really willing. The grafted skin is tight over his knuckles and it is pulling the fingers up. We know that this will be true of all the grafted areas and we are trying to prepare for constant stretching battles. Everyone has told us that a burn patent will always seek the position of comfort even though it will make functioning harder. Sounds like the majority of us. Anyway I visited with Clay's occupational therapist about the hand and she came in to have a look. She had been at a conference last week and could quickly see what I was concerned about. She said they might have to cast the hand, but she had another idea that she wanted to try first. Kristen spent several hours working with the hand and made him a new blue splint, (Clay picked the color) and she put small rings around each finger with bands to pull them down and stretch the skin over the top of the hand. It is a pretty neat invention and appears to be doing the job. Thanks. At the 2:00 visit Aunt Kay had arrived from Corpus. She is filling in for Grandma Joy this week. This was her first time to see Clay and I told her the visits were one hour in length and she did not have to stay for the whole thing if she did not want to. We walked out after 2 hours and 20 minutes. We helped Clay walk down to the window. He then made it back to his room where I promptly volunteered to hold him in my lap for a while. I rocked him in the chair for over an hour and Aunt Kay helped with all the little odd jobs that are associated with his care. We knew he was tired from all the activities of the morning but when I placed him back in his bed he asked for a drink and a cartoon. He received a breathing treatment at 5:00 and a new bandage all around his head to prepare his face for surgery. At 7:30 tonight he was sound asleep and had finally run down from a very full day. He is the second procedure on the schedule tomorrow and we will all be here waiting anxiously on the outcome of surgery VIII. I hope everyone had a good Monday. We are thankful for all of the gracious people who have helped us, we are trying to thank everyone personally but if we have missed you, thank you, thank you, thank you. Sincerely, The Fite Family

Sunday, March 29, 2009

Sunday, March 29th

Hello to everyone. Clay had a good day. He was uncovered at 6:00 this morning. I thought he looked cold so I grabbed a baby blanket and covered his chest and legs. His eyes promptly opened and he motioned with his hand to remove the blanket. He indicated that he was hot. I pulled down my mask and blew cool air over his arms and chest. Apparently this is just what he needed because every time I would stop he would wave to me to blow some more. He was awake at 8:00 and had a good bit of juice and almond milk with a few ice chips in between. We were a little late for the 11:00 visit and when we went in the door was closed to his room. We thought it was strange that they had not finished his dressing change, but when we looked in, his nurse Arne had drawn a face on his mask and made an eye mask and they were playing Ninja Turtles. They brought Clay a lunch tray and while he is not really interested in the food he was quite happy with the red jello. He ate several small bites and had some apple juice and more almond milk. He was awake for every visit today and did not have an upset stomach all day. We are thankful for this, because he has had some trouble holding everything down. I had an opportunity to visit with Dr. Arnoldo today and Clay is still on the surgery schedule for Tuesday. The surgeries are always moving targets but he indicated that they would probably work on Clay's face or left hand depending upon what they found when they started. I wanted to share a thought from our special meeting last weekend. We heard that you cannot save or store up grace. It flows out on an as needed basis. We have found that no matter how good or bad Clay's days are we can always count on God's grace. Thanks to everyone and goodnight.

Saturday, March 28, 2009

Saturday, March 28th

Good day for Clay with a few ups and downs. Thanks to Liezy for all of the caring attention. Clay was sleeping soundly at 6:00 a.m. this morning when we arrived for the first visit. He was receiving a breathing treatment through his tracha tube. As soon as it finished the respiratory therapist wanted to clean out his airway, this triggered his gag reflex and he was quickly sick at his stomach. What a rough way to start the day. We helped get him cleaned up and he promptly went back to sleep to get a little more rest before his big day really started. At the 8:00 visit the Occupational therapist came in and exercised both of his hands and arms. She then had him do his mouth exercises and finished up by moving his head and neck. He had a good workout and was now ready for his wound care and dressing change. When Deidra and I arrived at 11:00 he was in fresh bandages and the physical therapist were ready to have him take a walk. We helped get him ready and he set on the edge of the bed, and then with Mom's help he walked from his bed down to the end of the Burn ICU. This was the opposite direction from Kermit's room and he was able to look out the 6th floor window and see a sunny blustery day. He did not appear to be very interested in his view of Dallas. We helped him turn and walk back to his room. Upon arrival Dad was treated to a very special moment. The nurse had placed a rocking chair in his room and she said that I could hold Clay in my lap if I wanted. What kind of question was that? I have been wanting to hold him everyday since the evening of February 14th. We hooked him back up to all his monitors and tubes and he sat in my lap for forty or fifty minutes. He had his feet propped up in Mom's lap and she was feeding him a steady dose of ice chips, apple juice, and almond milk. Liezy let us stay an extra hour and hold and interact with him for the entire time. If she had told us we could hold him until midnight we probably would have stayed. We don't know if Clay enjoyed his sitting but we know it did worlds of good for a Mom and Dad that have been needing to hold their little boy for a long time. The rest of his day was pretty uneventful. He was worn out from all of his morning activities and slept through most of the afternoon visits. His Uncle Grady and Aunt Jenae stopped through Dallas on their way south to their new home in Buenos Aires, Argentina. They went into a couple of visits with Clay. The grafts on the back of Clay's head were not completely successful. They do not know what percentage actually adhered but there may have to be some more grafts done in this area. Clay had a busy day and it was quite a milestone for his parents. We are grateful for all of the progress he has made. Carson and Cody spent their day here at the Ronald McDonald House with family. We hope everyone has a good Sunday. Thanks to all.

Friday, March 27, 2009

Friday, March 27th

Hope everyone is staying warm this evening. This is Dad. Carson, Cody and I arrived back in Dallas tonight. Most of today's events were relayed to us by Mom and Grandma. Clay had a pretty good day. Deidra was allowed to help him walk this morning at the 8:00 a.m. visit. The physical therapist got him up and started him walking with Mom's help. He walked from his room down to Kermit's. He was not really a willing participant in this exercise, but he was not given a choice. When he arrived at Kermit's room he gave a wave and a thumbs-up sign to his new friend. The therapist thought that Clay had exercised enough and told him he could go back to his room and his bed. This was all the instruction he needed. He made a turn and headed back to his room at a faster pace than he had been moving. Mom jokingly told Clay he was barn soured like his horse Pete. I told Deidra he was bed soured. Clay was looking for the comfort of his familiar bed to get some relief from those painful steps he has to take on the road to recovery. After lunch they had Clay sitting up in his chair. The child life specialist asked that Clay be allowed to go to the play room too see several new toys that had been donated to the unit. Clay road over in his chair but he was much to tired and/or sedated to show much interest in the new gadgets. He'll really enjoy doing his therapy in the playroom one of these days. We feel like Clay showed some improvement today and we are thankful for this. They will probably have a good look at the back of his head tomorrow and determine the condition of his graft. Thanks to all who have been so gracious to Clay and the Fite family.

Thursday, March 26, 2009

Thursday, March 26

Hello to all. Clay was sleeping during most of our visits today. At our 8:00 am visit, the physical therapists sat him on the edge of the bed. He was dizzy and groggy; therefore, they laid him back down. They decided it would not be a good idea to make him walk, so they just helped him straighten his legs. The nurse placed Clay in a reclining chair and rolled him down to Kermit's room. They waved to each other and Clay was taken back to his room. He slept in his reclining chair for about 5 hours. During our last visit he was back in his bed. He was waving his hand and we couldn't figure out what he needed or wanted. We started the questions "Clay, are you hot? Are you cold? Does your leg, nose, hand, etc. itch? Do you want one of your stuffed animals?" We asked so many questions that he finally closed his eyes and shook his head. Sometimes we get it right and sometimes we never figure out what he is trying to tell us. Our night nurse (Alan) told us that, out of about 300 burn patients he has taken care of, waving the hand is the universal sign. This could mean any number of things. Tomorrow or Saturday, they will take the dressing off the back of his head to determine whether the grafts have adhered or not. All of his previous grafts have taken really well; so, we are hopeful that these will too. We are headed to bed & hope you all have/had a restful night. Special thanks to you all!

Wednesday, March 25, 2009

Wednesday, March 25

Good evening to all. Clay has not felt very good today because he has a stomach bug. They are treating this with a different antibiotic. The occupational therapist made him a new splint for his right hand. After his morning wound care, the respiratory therapist placed him on the respirator for a few hours to give him a little rest. He was sleeping a lot today, which his little body needs. We just want to hold him and give him a big hug. The physical therapists did not work with Clay today because of his surgery yesterday. They also knew that he did not feel well. Little Kermit walked past Clay's room today. Clay lifted his hand and waved to Kermit. Kermit waved back and gave Clay a thumbs up. It was so cute. It is so touching to see these two interacting as best they can. Maybe the antibiotic will help Clay feel better by tomorrow. We hope he has a restful night. A few verses from our Wednesday night bible study have touched our hearts (Exodus 14:13,14). Our heartfelt thanks goes out to each one of you. Good night.

Tuesday, March 24, 2009

Surgery VII Tuesday, March 24th

Good evening to all. Clay had a good day with a very caring nurse. Thanks Stephanie. Thanks to all our wonderful nurses in the ICU. Clay was the second surgery this morning. He went in around 9:30 and came up a little before noon. When Dr. Arnoldo came up to see us after the surgery he said they laid Clay on his stomach and used his own skin to graft the back of his head. He was pleased with the procedure and tentatively placed him on the surgery schedule for next Tuesday. Clay came up from the O.R. with a cool new white sock cap. He was a little groggy but he seemed to recover and rested through a little excitement this afternoon. Deidra and I went to eat in the UT Southwestern cafeteria for lunch. On our way back up for the 2:00 visit the fire alarms started flashing. They told everyone in the med school that it was a drill. We quickly walked back to Parkland. When we entered the Parkland building they routed us straight out the front door where we were greeted with 5 Dallas fire trucks with lights flashing. I tried to go upstairs and a policeman quickly turned me around. Apparently there was an electrical fire on the 9th floor that was caused during some maintenance. They had it contained. Deidra and I were more than a little worried at this point. While we were waiting and wandering what was going on, Stephanie (Clay's day nurse) called to say he was fine and everything was under control in the burn ICU. We were grateful for this information and tried to wait patiently until they let us go back up the stairs about an hour later. There was a pretty strong "burned wire" smell, but other than that we could see no damage. Clay was sleeping soundly when we finally arrived and Stephanie said he had been asleep through all of the beeping alarms and excitement. Clay was still sleeping during the evening visits. He woke up a few times and would exercise his little fingers & mouth for us. We know that each surgery is a step of progress. Thank you for all your thoughts & prayers. Have a good night.

Monday, March 23, 2009

Monday, March 23

Hello to all, it's Joy (Deidra's mom). I am going to type the blog tonight because our last visit was emotionally upsetting. Chance is at home with the boys. He put them to bed and needs to sleep himself. He is leaving the house at 3:00 am to be here in time for the 6:00 am visit. Granny (Jenae's mother-in-law) is at the house too. She will get the boys ready for school. Clay is second case for surgery in the morning. The doctors are planning to take the homograft off of his face and place a product called "Integra" on his face. This will be on his face for at least 17 days and then they will place autografts (own skin) over this. I will have Chance and Deidra explain this tomorrow. They might graft the back of the head also. Once they have Clay under the O.R. lights, they will have a better idea of what needs to be done.
Clay walked during the 2:00 pm visit. He did not want to get out of bed and walk. When he heard the Physical therapists outside his room, he began to cry and shake his head. Clay does not like to get out of his comfortable position. We had to remind him again how needful the therapies are. The occupational therapist made him some mouth stretchers, and a new splint for his right hand to position the fingers differently.
During the last visit of the day, Clay began to cough up mucus through his trache. After coughing some he began to throw up and we were covering his trache opening and trying to keep it clean. It is hard to tell if he is breathing out of his nose or mouth or the trachea tube. It is unnerving to have that happen. It was hard to leave tonight! The words of that hymn come to mind, "What I have no power over, I will leave in Jesus' hands"! We find SO MUCH coming our way that is out of our hands! We are so thankful we can trust in our heavenly Father.

Sunday, March 22, 2009

Sunday, March 22

Hello to all. Today was quite a restful day for Clay. During the first visit, Clay had some sunglasses on. He had them on yesterday for most of the morning. He did not want them removed. The nurse told us that some of the kids like to hide behind their sunglasses. The X-ray showed that Clay's lungs are better. He was moved to his wagon for a few hours today. He was happy to be placed back in bed on top of his special air mattress. He also ate a little bit of jello at lunch. His next surgery is scheduled for Tuesday. We are not exactly sure what procedure the doctors will perform during this surgery. We will find out more tomorrow. We hope you all had a restful Sunday.
We heard some special thoughts during our church meeting today.
* Faith is a positive thinker. It can take a negative experience and make it positive.
* We can be a thermometer or a thermostat; we can either give a reading of our environment or we can set the temperature.
* During the storm, the leaves have to cling to the branch. If they are blown off, they will not be a part of the tree.
Thanks again for your thoughts and prayers.

Saturday, March 21, 2009

Saturday March 21st

Brief note tonight. Clay was having trouble controlling his respiratory rate this morning. They placed him back on the respirator for about 4 hours today to give him some rest and assist him in breathing. They did an X-ray of the lungs and found more fluid than is needed. He was given two big doses of Lasix to start pulling the excess fluid from his body. The nurses are keeping a constant eye on his breathing tube and trying to keep the mucous level as low as possible. Our best visit today was while he was on the respirator. He was showing us how he could work both of his hands. We have a red ball about the size of ping pong ball that Clay can squeeze and throw. When we left after the good visit he was still holding it and squeezing as we left. When we came back for the last visit this evening he was sleeping soundly but he still had his ball in his good right hand. We were warned several times that there would be peaks and valleys in the recovery process. The night nurse wanted to get wound care over early, so Clay could have the majority of the night for sleep. Please remember Clay in your prayers. Have a good Sunday.

Our heartfelt thanks,
Chance, DeeDee, & boys

Friday, March 20, 2009

Friday March 20th

Hello to all tonight. Clay had a pretty good day. He is having a little problem with his trachea tube. It seems he is generating an excess amount of mucus in his airways and this is causing problems when he is trying to expel it. The nurses have sucked out his airway so often that there is irritation there and they are now getting some blood mixed in the mucus. This is worrisome and they are increasing the breathing treatments with the respiratory therapist. They have increased the humidity in his breathing tube as well.
The physical therapists worked with Clay during our 2:00 visiting hour. With the help of the therapists, Clay walked down to Kermit's room and back. Then, Kermit walked to Clay's room and back. They each raised their little hands and waved to each other. Clay was put in his wagon when he got back in his room. The short walk wore him out, and he was asleep immediately. Carson and Cody wanted me to tell you that they gave Clay two stuffed animals today from "Build a Bear". Aunt Susan (Chance's sister) lives in this area and took Carson & Cody to make a bear for Clay. They have removed the big bulky bandage from Clay's head so he has full sight out of both eyes again. He has learned that when a therapist or a nurse approaches he can quickly pretend he is asleep and they might not do any thing unpleasant. This trick is only good for a little while because they are all starting to figure him out. Thanks to everyone. I hope that all have a good weekend.

Thursday, March 19, 2009

Thursday, March 19

Hello to all. We can see Clay's nose again today. He was sick to his stomach this morning. Therefore, the doctor told the nurses that they could take off the thick dressing on his face. During wound care, the nurses placed thin gauze over the grafts. Carson got to be with Clay during one of the morning visits, & maybe Cody will be able to visit again tomorrow. If Clay could talk to us right now, I think he would ask for a nose scratcher. We have been told that during the healing process, the skin will itch continuously. Clay wriggles his little nose like a rabbit. We make sure we have our clean gloves on, and then help him gently scratch his nose to relieve the itching. Although the skin on his nose was not burned, it itches terribly. The skin around the feeding tube gets irritated also. He began to cry today when we could not figure out where his skin itched. The nurses gave him Benadryl throughout the day for his itching. This made him very drowsy and he slept a lot. Although we did not get to witness it, Clay walked approximately 20ft. to Kermit's room today. Kermit was in his wagon and was pulled to Clay's room for music therapy. I wish we could have been in there to see all of this. Tonight during our last visit, Clay wanted us to sing a hymn and tell him a bible story. We are thankful for all the doctors, nurses, therapists, etc. We also want to express our thanks again to each one with love. ~

Wednesday, March 18, 2009

Surgery VI March 19th

Hi to all. Clay went to surgery as scheduled this morning about 7:45. He was in for a little over two hours. Mom and I attempt to explain each surgery before he goes down to the O.R. We usually keep it simple and to the point, so he will understand where he is going and that the doctors are making his hurt spots better. After this morning he will probably not buy that story again. He had progressed in leaps and bounds and every time we saw him his little face seems to be improving. He awoke during the 6:00 a.m. visit and we read a couple of good books and his eyes were wide open and alert. When he came back from surgery his face and head were completely encased in about an inch and a half of bandages and gauze and the only part of his face that we could see was swollen from the surgery. The surgeons had attempted to create a couple of peep holes in the mask but one is up near his right eye and he doesn't try to open that eye. All of that being said, we were really worried about how he would react to this new predicament. When the after effects of the sedatives had worn off, and his eyes started to open, mom and I explained to him that he had a big band aid all around his head. Clay knows from experience at home that a good band-aid fixes most ailments. He did really well in spite of the head and face being wrapped. Some clowns, from the Children's Hospital, stopped by his room today. They gave him a clown nose, which he was able to toss to us. During the surgery today they placed homograft skin on his cheeks and forehead. This is skin from a donor. It is used to ensure that the next step will go as planned and the face is ready to accept his skin. If this homograft skin has adhered to his face they will take it off and graft his face with his own skin. The burn doctors have a conference next week. Clay will only have one shot at surgery next week (Monday). I hope this sums up the majority of the day. It seems Clay will have some tedious days ahead. Thanks to everyone for your interest and for keeping Clay in your thoughts and prayers. Good Night

Tuesday, March 17, 2009

Tuesday, March 17

Hello dear family & friends! Did you wear your green today......or did you get pinched? :-) We did not even think about it until we arrived at the hospital & most of the nurses and therapists were wearing green and tried to pinch us.
Today seemed to be a tiresome day for Clay. He has not been able to keep any foods down. He does have a feed tube; although, the "new" foods introduced through his mouth have come back up. I would estimate that he has had less than a tablespoon of liquids (juice & milk) on his stomach today and it still does not set well with him. He seems to have a lot of phlegm in his throat; in turn, this seems to trigger his gag reflex. This is just what I think. :-) When we tell him what is on his food tray, he just mouths "water, water." It breaks my heart when I have to tell him that they will not let him have water. He does get a few ice chips each day. We were told that we could bring some baby foods to see how he likes them. We are going to try to find some organic baby foods tomorrow.
Carson and Cody were allowed to go into Clay's room today. Cody has been wanting to read Clay a book, and finally got his chance. His brothers read him several books during the 2:00 visit. Clay was sad during this visiting hour. He would have loved to be able to go with his brothers. The occupational therapist and physical therapist said that he did a wonderful job today working with them. He walked again and helped put a small puzzle together. We did not get to see this today, but were told about it. The doctors told us that Clay is the first case for surgery in the morning. They are going to do work on his face. Dad will be here early in the morning. We will be able to see Clay before surgery. We are going to head to bed and say our prayers. Good night and thanks so much again!

With all our heart,
Chance, Deidra, & boys

Monday, March 16, 2009

Monday March 16th

Wow! There is a lot to tell since the last posting. I received a call last night around 11:15 asking for permission to do an emergency procedure on Clay. There had been a little accident during his dressing change and on of the IV catheters in his left wrist had been cut while removing the bandages. A portion of the IV tube had gone up into his vein and they could not get it out without making an incision in his arm and surgically removing the piece. They called back around 12:30 a.m. to say that they task had been accomplished. We were relieved but worried about what the day would hold. Mom and I were afraid he would be to groggy from the after effects of the surgery to perform well in his swallow test today. I am in Olney. DD and the boys are in Dallas with Grandma, friends, and family. At about 9:00 this morning the speech therapist came in and Clay successfully had dyed applesauce, a little graham cracker and some juice. He received the green light for some pureed foods. These would be the first bites he has taken since February 14th. Everyone was excited with this progress. The momentous day was not yet over. At 2:00 this afternoon when DD and Joy went in for the visit the physical therapist was working with Clay. After a little warm up, and with a little help, Clay was able to tip toe out of his ICU room and make a grand entrance onto the floor of the unit. There was much cheering and clapping from the entire nursing staff. Mom said he took no more than 8 or 10 assisted steps but there was definitely a small smile on his face when he reentered his room. He was worn out from all of these activities but he had to set up in the wagon for a while before he was allowed back in bed. All of his new food items did not set perfectly on his stomach and he created a bit of a mess at the 5:00 visit but he was cleaned up and back in bed for the last visit and Deidra said that he should sleep well tonight. Today was proof positive that all of those prayers are being answered. Please continue to pray for his face, the back of his head and his left hand. We are thankful for all of the progress and blessings so far and cannot wait until we can one day hold our little boy again and bring him home. Thanks to all and Good Night.

Sunday, March 15, 2009

Sunday March 15th

Hello again. Clay had a pretty good day. He was much more awake and aware of his surroundings. He was even awake when we went in at 6:00 this morning for our early visit. He had a visit from the doctors this morning right after dressing change and the put in a central I.V. in his groin area. The nurse explained that this would be more comfortable for Clay and reduce the amount of times he would have to be stuck with a needle this week. Apparently after continually placing I.V. s in the hands, arms , and legs it gets much more difficult to hit the veins and they put in the central line to give them a rest. They also came in tonight and indicated that Clay had reached another milestone of sorts. He is to be placed on a standardized sleep/wake cycle. This means they will not be doing dressing changes or any procedures through the night that might interrupt his nights sleep. I am sure he will be happy to have this normalcy as soon as his body adjusts. Mom and I discovered the one disadvantage to him being awake and aware was that he could more easily break our hearts. When our visiting hours were over we would let him know we were going to step outside. His bottom lip would start to stick out followed by tears and we would have to go right back in and give him a pep talk. In the last visit this evening his mother and aunt were giving him some ice chips. They try not to give to many. He looked up at them and held up the index finger on his right hand and mouthed the word more. Of course after that he could have probably talked them out of the whole cup. Today seemed like progress to us. Thanks for all of the prayers, visits ,and encouragements.

Saturday, March 14, 2009

Saturday March 14th

Good evening to all. It has been exactly one month since the accident and Clay has been holding down his bed in the ICU for all of it. We are thankful for the healing process we have seen over this first month and five surgeries. Deidra and I realize that there are still many struggles and trials ahead for Clay and ourselves, but we are also grateful that we have come so far so fast. I can think back to Valentine night and know that we are very lucky that this little boy is still with us. We have seen several people come in and out of the ICU throughout the month and many people's struggles and burns are worse than Clay's. Clay is currently fighting a urinary tract infection and the antibiotics are hitting him pretty hard. Sunday will be a day of rest for Clay with no therapy scheduled. We hope that Monday brings a successful swallow test and a few tentative steps with the P.T. Several visitors today, and we were glad to see each one. Hope everyone has a good Sunday please keep Clay in your prayers.

Friday, March 13, 2009

Friday March 13

Hello everyone. Clay had a pretty good day except for the fact that he was a little over medicated and slept all afternoon. We are not sure if it was the medication during his dressing change or the cool rain, and overcast day but he was nearly impossible to wake up this evening. I am looking at the sleep as a good chance for his body to recover. We had several new visitors today. Clay's uncle Grady flew in from Santiago, Chile this morning and was able to sing him a hymn during the 8:00 a.m. visit. Clay appreciated his uncle's voice much more than Dad's. The childlife specialist took Carson to Clay's room today. Carson was able to be with Clay and read him a book. Cody may get to read Clay a book this next week (Spring Break). The childlife specialist will decide if Cody can go in or not. Mom, Grandma, Granny, and Cody all arrived this afternoon. We are also glad to see Jenae, Whitney, and Westin all the way from Indiana. Clay was scheduled for a test with the speech therapist to see if he could swallow and start on some pleasure foods. She showed up this afternoon and Clay would not wake up enough to participate in the test so it has been rescheduled for Monday. We appreciate everyone who has come to visit. Deidra and I know it takes a lot of time and effort to come and we are thankful so many have been willing. We also appreciate all of the thoughtful cards and letters that have continually arrived since the accident. We don't want to be redundant but once again thank you all for your kindness and prayers. I would like to wish everyone a good weekend and goodnight.

Thursday, March 12, 2009

Thursday March 12th

Good evening to all. Clay had a day of rest after surgery. He was even allowed to skip physical therapy because of the new grafts on his arm and below his belt. He seemed to be in pretty good spirits although he is still quite thirsty. He has a feeding tube that is bridled into his nose, this tube appears to be very uncomfortable and he is always wrinkling his nose up and down trying to scratch where it itches. Mom and I both try to help him but we are never sure we are scratching the right place. He was placed in the wagon after his 11:00 dressing change. When we came back at 2:00 for the visit the door to his room was opened and several of the nurses were gathered around. Our alarm quickly faded when we got down to his room and realized what was going on. There is one other child in the Burn ICU he was brought in the same night as Clay and they are both the same age. His name is Kermit Maxwell. We are pretty sure Kermit and Clay will be big buddies before this experience ends. Anyway, Kermit and Clay were both in their respective wagons and the music therapist had his guitar and was playing and singing for both boys. The occupational therapist was taking the opportunity to have them both move their hands and work on motor skill exercises while the music was played and all the nurses were their audience. We enjoyed seeing both boys, and are sure they were happy to see another child in an adult world. The remainder of the day was spent in rest. Clay was placed back in bed and promptly went to sleep. Mom went to Olney this afternoon to sleep in her own bed and straighten out the house. Thanks to everyone. Please keep Clay in your thoughts and especially your prayers. Good Night

Wednesday, March 11, 2009

Surgery V March 11th

Hello folks. Long day at Parkland. Clay was the second procedure and did not go into the O.R. until after 11:30 this morning. He was in until nearly 2:00. When he came up from the operating floor everyone was anxiously waiting for him. They placed grafts on his upper left arm & a spot below his waist. This is the first surgery he has had since his eyes have been open. He had a nervous look as he watched the nurses preparing him for his trip to the operating room. They allowed us (Dad & Mom) to stay by his bed while they got him ready. The childlife specialist, for the burn unit, has been so helpful in teaching us age-appropriate reassurances to use with Clay before surgery. Dr. Arnoldo visited with us right after surgery and he said that all went well. He had a close look at the left hand and is going to wait on it as long as possible. There have been several big burns come in recently and he said he would put Clay on the schedule again for next Wednesday. He will probably start work on the face and head then. We are encourage that he is waiting on the hand. Tonight, during our last visit, DD and I talked to Clay and held his hands. He lightly squeezed our hand with his left. All in all we were encouraged by today. We are continually thankful for your prayers, thoughts, & support.

Sincerely, Chance & Deidra (DeeDee)

Tuesday, March 10, 2009

Tuesday March 10

Hello special family and friends! Little Clay is worn out tonight. During our last visit this evening, he was sleeping. We did not want to wake him. The physical therapist (along with 2 extra therapists, 2 nurses, & mom) helped Clay stand again today for a minute. It was a loooong minute for all of us, especially Clay. The occupational therapist brought some neat toys in today for his therapy (foam dart gun & colorful rings to place over a rod). This worked his right hand. Clay did not want to be placed in the wagon today because any movement is painful for him. He did sit in his "special" chair today, but cries when he has to be moved to & from his bed.
Today we had some sadness. We have learned that all "burn" patients have an unquenchable thirst. This thirst lasts until they can quench it, however long that may be. We have thought about Jesus often today. He once said "I thirst". It is very obvious that Clay wants ice or water because his eyes look longingly on us. His lips open and close to indicate his thirst. The few pieces of ice that the nurses allow us to give him do not quench his thirst. It has been very hard to walk out at the end of each visitation with Clay longingly looking after us, crying, and opening his mouth for more. They say if he gets too much water, it could disturb his sodium/water ratio. This could cause seizures or it could settle in his lungs. Dad will be back in the morning for Clay's 5th surgery. The doctors will place grafts on a spot on the left arm and a few other spots. They will perform a debridement on his left hand & then wait some more to see how much the body will heal it. We will trust our Good Shepherd who is looking down on us. Thanks again from our hearts to yours.

Monday, March 9, 2009

March 9, 2009 Monday

Good evening everyone...Jenae again (typing as DeeDee dictates the day to me)! Today was a busy day for Clay! The first two visits this morning Clay was sleeping very soundly. On the third visit of the day, we walked in and Clay was sitting up in a special chair (reclines and is like a "bed chair", if you will). That was neat to see. After lunch we were getting our gowns, masks, and hair covers on and the doors to the ICU opened. There was Clay being rolled out of his room in a wagon! He didn't look too comfortable, but it was great to see him out of the bed. Grandma and I got to pull him around the Burn ICU. He was looking around at all of his surroundings. It's quite a thing that he's at this point. Once back in his room, the physical therapist worked on stretching his little legs. As painful as it was, they stood him up on his feet for a brief moment. His special "boots" (or foot braces) were placed on his feet to keep the muscles in his calves stretched properly. Mom and Grandma are allowed to feed him ice during the day. He really loves it! Grandma told him to look at the cup when he wanted a piece of ice. DeeDee was reading him a book this afternoon and he kept glancing at the ice cup, saying with his eyes, "Give me another piece, please!" That was cute! Later in the day he was sleeping off and on. He is just worn out! He does cry a lot because of the pain. DeeDee can't wait for the day when he can talk to them and tell them where he hurts. It's hard for a mom to see her child hurting and not be able to help. Chance and DeeDee are extremely grateful for all the support, prayers, blood donations, monetary donations, food, etc. Thank you!

P.S. There have been several people, who in years past have been in the Burn ICU. They take time out of their busy schedules to come to the hospital and tell their stories and visit the families of the patients in the burn ICU. This is very interesting and very inspirational for all of us to meet them, hear them, see them now and know what they have overcome. Thank you! DeeDee and Chance express their deepest thanks again.

Sunday, March 8, 2009

Sunday March 8

I'll make this quick tonight. I'm using the computer here at the Ronald McDonald House. There are a few people waiting in line to use it too. Clay had a seemingly restful day. The nurses changed his catheter last night. What a difference this has made! Clay is happy to have this new catheter. The physical and occupational therapists usually do not work with the patients on Sundays; so, this was a restful day for Clay. I hope he sleeps soundly tonight, because it is back to work tomorrow. They will start stretching those legs, feet, arms, & fingers. The nurses let Clay choose the cartoons that he wants to watch. We had to wave our hands in front of his face today because his eyes were fixated on those cartoons. I've got to close for now - will post more tomorrow. Special thanks to you all!

Saturday, March 7, 2009

Saturday March 7th

Hello to everyone. Long day and losing an hour tonight will keep this short. Clay had a pretty good day except for the catheter issue. It is still causing him much discomfort. He can be resting peacefully and wake up crying when he has to urinate. One huge milestone was reached today in Mom and Dad's eyes. Clay was placed in his chair/bed after lunch and at 2:00 this afternoon the physical therapist asked us to help them set him on the edge of his chair and then to assist him in standing. HE SUCCEEDED. He was very weak after so many weeks in bed but he supported the majority of his weight for the quick minute he had his feet under him. We picked him up and put him back into bed and you could see the relief. It was a hard 30 seconds on a little guy and it was harder on Mom and Dad. He then did a few more exercises and was ready for an afternoon nap. We have surgery number 5 tentatively scheduled for next Wednesday. Thank you to all who have called, written, or visited. Special thanks Tower Extrusions and all of the folks there who have been more than helpful and understanding throughout this experience.

Friday, March 6, 2009

Friday March 6th

Hello to everyone. Long day today so update may seem a bit short. We made every visit of course. Clay had an excellent nurse today. Clay is alert and moving a great deal. The physical therapist told us that she may let him try to sit on the edge of the bed tomorrow or possibly stand up. This is a bit hard for me to believe but we will see what tomorrow holds. Clay was having a pretty good day today. The only issue that he had was with his catheter. Each time he had to urinate he would start to cry and try his best to reach down and pull it out or push it to one side. This went on all day. We called in the nurse who thought it was a donor site that was uncovered near his groin. We helped him cover it and thought we had the problem solved, but next visit the crying started again. The nurse called in the doctor who said that the catheter had to stay in place and ordered a numbing agent for the night. Mom and I did not like to leave the last visit without knowing if they had solved the problem. Hopefully they have. We voted for a diaper and removal of the catheter but we were overruled by the doctor of course. It is really hard to watch your child in pain and not be able to help him. Many visitors today and all were welcomed. Two of the most important to arrive were Carson and Cody Fite it felt like we had not seen them in a month. We are still uncertain about the left hand and they are planning surgery in that area for next week. Please continue to pray that Clay might be able to keep those precious fingers. Thanks to all, and to all a good night.

Thursday, March 5, 2009

Thursday, March 5

Good evening friends and family. We had a surprise this morning. About 7:00am (visiting time was over) our night nurse ran out of the burn ICU to find us. She said "I want you to come quickly because Clay has his eyes open & he wants to see mom & dad." We went in to say "Hi" to Clay. I'm sure we looked unrecognizable. We are required to wear head covers, masks, & gowns when we enter the ICU unit. We pulled them off for just a second so Clay could see that his parents were in the room. With tips from the "burn" childlife specialist & encouraging words of our own, we continually reassured Clay. The nurses have been telling us for the past few weeks to get as much rest as we could, while Clay was sedated. We realized today that our work is just beginning; but, we welcome it. Now that Clay's eyes are open, he can see all the strange machines, tubes, & bandages that surround him. What a strange, new place Clay has awakened to. He can't move or turn his head much, but his eyes can follow us around the room. The hours between visits seemed so long, knowing that Clay was waiting for us to walk back in his room. He cried often, but we constantly reassured him. At the end of each visiting hour we would tell Clay that the nurses needed us to step out of the room for a short time. We told him that they needed to give him medicine, new bandages, etc. We reassured him that we would be outside the doors.
Uncle Jace & Aunt Dana drove in from Omaha, NE today to see Clay. Dana (Deidra's twin sister) flew down right after the accident & was encouraged with the progress she saw today. We are going to head to bed so that we have the strength to help him tomorrow. Thanks to everyone! Good Night!

Wednesday, March 4, 2009

Surgery IV March 4th

Hope everyone is having a good night. Clay had his fourth surgery today. He was the second procedure and did not go into the O.R. until about 11:45. He was in surgery about 2 1/2 hours. They worked on a burn on his upper left leg. They took skin from the right to repair the left. We were so encouraged this morning at the 6:00 visit because he looked so good. When he came out of surgery we barely recognized him. They had removed all bandages and performed a debridement (took off the burned portion of skin on his face). Clay has been such a "trooper" through all of his surgeries. He has remained strong. We visited with Dr. Arnoldo after the surgery. There are still areas of concern and more surgeries to come, but we go forth on faith. We are comforted that we can leave it in God's hands.
We'll mention one last thing before we close. The nurse let us come in and be with Clay while they prepared him for his trip to the O.R. He was sleeping peacefully when we entered the room. Dad thought the light was too bright above his head, so the nurse turned the lights down. Clay began to cry, so Mom turned the bright lights back on. Clay fell into a peaceful sleep again. :-) We are heading to bed & hope for peaceful sleep. Our heartfelt thanks to you.

Chance and Clay (Curious George and Man in Yellow Hat) Halloween 2008

Fite Family

picture of Clay

Tuesday, March 3, 2009

Tuesday, March 3

Today was a rather quiet day in Clay's room. During our early morning visit, we said good morning to Clay and he started crying and reached for us. We were able to console him and he went back to sleep. Clay has been breathing, without the help of the respirator, since 3:00am (18 hours today on his own). Clay seemed to be sleeping well during most of our visits today. The physical & occupational therapist worked with him between visiting hours. The nurse took her time with his wound care this morning (2 hrs). By the time we stepped into his room at 11:00am, he had fresh gauze (dressing) on and was sleeping. We exercised his fingers during one visiting hour. Otherwise, we tried not to disturb him much today. He had a busy day yesterday and with surgery tomorrow, the downtime was welcome today. His surgery is scheduled for the 2nd surgery of the day. Thanks again for prayers & thoughts that are sent our way. Good night, sleep tight (this is what we say to Clay each night).

Monday, March 2, 2009

Monday, March 2

Hello wonderful friends & family! I hope you all know that this has been good therapy for us to talk about Clay's progress each day. Today was a busy day for little Clay. According to our night nurse, Clay had a good night last night. Then, it was time to get to work today. Clay was breathing on his own, without the help of the respirator, for about 9 hours today. The occupational therapist and the physical therapist are encouraging & helping Clay exercise his muscles. During one visiting hour, the occupational therapist was exercising his arms and fingers. During the next visiting hour, the physical therapist was exercising his legs and feet. The therapists were so pleased because Clay was so cooperative (this makes their job much easier). He got an ice chip as a reward and it looked like they had given him a big scoop of ice cream! They encouraged us to exercise him during our visits. During our evening visit, Mom decided to exercise his fingers once more. Clay shook his head "No", as if to say "I've had enough exercise for one day." Mom was going to rub some lotion on his legs and once again he shook his head. We let him rest! He did like having his little nose scratched though. He was wiggling it like a bunny rabbit. Mom welcomes any excuse to touch him! One last thing; Clay even tried to get out of bed today. The nurses convinced him to stay put for the time being.
To future visitors: We have found a nice, quiet waiting room on the 5th floor. If you do not find us in the 6th floor waiting room, we will be one floor down. Keep us in your prayers & thanks again for your support!

Sunday, March 1, 2009

Sunday, March 1, 2009

This is Jenae again...filling in for Chance and DeeDee. Chance went back home to be with Carson and Cody for a day or so and DeeDee is at the hospital.

Today was an emotional day for everyone. Clay cried a lot today and DeeDee cried a lot along with him. One of his eyes was bleeding this morning and it was very hard for Chance and DeeDee to see those tears streak down his little face.

They took the respirator off him for 4 hours today so he was breathing with just the oxygen cup over his trach tube. That was good news. Chance and DeeDee just hold his hand and try to comfort him. They met the new doctor this morning who will be on for the next 30 days now. He tentatively scheduled Clay's next surgery for Wednesday.