Sunday, May 31

Hello to all! Clay was active and had a lot of visitors today. He was showing us how he could run down the hall. His brothers, family and friends wanted to see him. Only two visitors are allowed in his room; so, we placed him in his wagon and took him down the hall to see his visitors. A nurse and therapist brought Clay a real fish this morning. It is in his room and he named the fish "Nemo". He carried his fishbowl in his wagon so that he could show his brothers his fish. He laughed a lot today, and Chance had Clay really stirred up because he was tickling him. We brought him a chicken fajita this afternoon and he said "Mmmm....this is delicious" after each bite. It is a new month tomorrow and so we will have a new burn team in the unit. The doctors are wanting to go ahead and send Clay home with his trach tube. We are not comfortable with this and will talk to the doctors tomorrow. The ENT doctors at Children's hospital said that Clay needs to be comfortable with a "cap" over his trach before it is removed. If Clay is discharged from the hospital this week, we will probably still be staying at the Ronald McDonald House. Clay will have to go to the hospital for (outpatient) therapy several hours each day. He has been fitted for pressure garments and still needs to be fitted for a face (pressure) mask. I'm not sure if they will make his mask this week, or if this will be something that will be made after he's discharged. He will have to wear his pressure garments and mask for at least the first year. He will also need to stay out of the sun for the first year. We'll just find a lot of shade so that we can spend time outdoors. This will be a busy week with a lot of new changes. Thanks so much and have a good night.

Saturday, May 30th

Good evening, we apologize for the skip. It was not intentional, just exhaustion. The Fite family had a big day on Clay's behalf. Adventure Boot Camp in Carrollton sponsored a 5K run to benefit Clay. A lady that is a friend of the family organized most of the event, (Thanks Callie). There were several sponsors and many participants that ran on Clay's behalf. We appreciate everyone who helped or ran. Carson and Cody were the starters for the race and they enjoyed the opportunity to help out. This is Dad and I spent last night and today with Clay. He had a fairly restful night and a busy day. He has started eating like a horse and tonight he told me, " This spaghetti is delicious." Big words from a boy who hasn't spoken in over 100 days. He walked quite a bit and spent some time in the hall visiting with several family members. I think he enjoyed being the center of attention. We are hoping he continues to progress at the pace he has set for himself. It amazes us that his strength is returning so rapidly. We know it is the thoughts, prayers, and love of all that are assisting him in his recovery. He will have several rehab sessions in his future, but we will help him work his way through them. We wish everyone a restful and blessed Sunday. Good Night.

Friday, May 29

We apologize for not posting on the blog last night. I stayed at the hospital with Chance and Clay and it was late when I arrived at the Ronald McDonald House. Clay had a really good day yesterday. He is eating and drinking much more. He is excited when his tray arrives to see what he wants to eat first. He is keeping all of his food down and is becoming more active each day. His trach tube will come out this next week if he passes the "cap" test. He has a special valve over his trach tube right now and is doing fine with it. He is talking constantly, which is good therapy for his mouth (and good therapy for us to hear his voice). We were told that he could possibly go home next week (if he doesn't have any breathing problems when the trach tube comes out). If Clay is discharged from the hospital next week, he will still go in everyday for outpatient therapy. The Care Coordinator will visit with me about all the specifics. We will post more later. Thanks to all!

Thursday, May 28

Hello to all! This is a late post as I did not leave the hospital until about 9:00pm. Uncle Jace and Aunt Dana wanted to be on night watch with Clay tonight. They arrived this afternoon from Omaha, NE. Clay had a busy and great day. He had an early bath and just had some Tylenol for pain. He says that he doesn't hurt, but they give it just in case. Clay had his feed tube, as well as the bridle in his nose, removed this morning. He gagged when the tube came out and almost jumped out of bed when the bridle was removed. He ate so much today and is drinking his supplement liquid (Kid Essentials) in a cup. He had some chicken on his tray for supper (he no longer has to have the pureed diet) and he said, "This....chicken.....is.....good." He was hungry for strawberries, so we brought him some. What a delicious treat! The ENT Dr. from Children's Hospital arrived about lunchtime to replace Clay's trach (pediatric tracheostomy tube) with a smaller one. Clay is able to force air over his vocal chords with this one and so he has talked to us all afternoon. It is wonderful to hear his voice.
Clay walked further today than he has walked since we have been here. He walked from his room to the Burn (in/out patient) Clinic to get fitted for pressure garments. We helped him pull some shorts & a T-shirt on & off we went. The Physical therapist told us that the distance was approx. 340 ft. We had some family and friends arrive during this time, so we all walked with him to the clinic. We were all so happy for him. We also had another friend come this morning and he brought a State Trooper with him. He brought Clay a special bag filled with neat things and helpful info.
We are thankful for you all and are thankful that we can carry all our worries and fears to God. We are so thankful that He is guiding and giving "daily" strength. Good Night.

Wednesday, May 27

Hello to all! This is DeeDee again. Since we are able to be with Clay 24/7, it's hard to remember all the events in a 24 hour time period. I was allowed to help Clay with his bath yesterday, but not today (depends on the tech). He came back from his bath sitting on a rolling chair with a smile on his face; so, the bath wasn't so bad after all. I had asked the doctors last Friday if they could take Clay off of some of his anti-nausea medications. Since he was vomiting with the medicines, I didn't think it would hurt to vomit without them. I didn't want so much medication in his little body, especially if it didn't seem to be helping the problem. The doctors said that they would discuss it. A day later, a gastro doctor from Children's hospital showed up. He ordered for Clay to be taken off all of the anti-nausea medication for three days. If he is still vomiting, after three days, he will be given a different medication. Clay went for a ride around the BICU today and waved to everyone. One of the ICU nurses noticed that Clay's feed tube was out too far (as he drove past her in the little jeep). The doctors came to his room this afternoon to see if they could push it back down. This was uncomfortable and made Clay gag. An x-ray showed that the tube was not down far enough. The feed tube will be removed for a day. Clay may not have to have the tube put back through his nose, if he is able to keep his liquid down. We are hoping for no vomiting during this time. He will also get a smaller trach tomorrow.
He had a lot of fun with O.T & P.T today. It is amazing how independent he is already becoming. I'm going to get some rest. My mom is at the hospital tonight and I'll arrive early in the morning to take over. Thanks for all your encouragement, it is such a help to us.

Tuesday, May 26th

Hello everyone. Clay had a restless night and I finally let him get out of bed to sleep in my lap for the last hour. He was determined to pull the covers over his head all night. At 5:00 a.m. the night nurse announced that he was on the schedule at Children's for a 10:00 test procedure. This changed some of our plans. I stayed in Dallas with Grandma to make sure I was there when he went over to the other hospital for the test. Deidra left Olney as soon as the boys were on the bus and she made it to Parkland in time to run up six flights of stairs and ride over with all of us before the test. The team from Children's were great. Dr. Johnson did the procedure and was pleased with what he saw of Clay's upper airways. He said Clay is going to have to start exercising his mouth and get it stretched out. It was to tight for them to open and they had to run the scope in through Clay's nose. They finished the test quickly. He was returned to Parkland, and as soon as he started to wake up he went to the tank for a bath. Mom was allowed to go in with him and I left Dallas heading back to Olney. I will check in with DD after Cody's baseball game and add any additional details. More later, Thanks. Cody played his last machine pitch game of the season. DeeDee is having trouble getting her car started. Clay is not worried about either of the aforementioned. He walked unassisted to and from the playroom this afternoon. He was very hungry when dinner was served. There was a tomato sauce with some meatloaf and he ate all of the sauce and part of his meatloaf and indicated that he wanted Grandma to get more sauce. He had some small pieces of peaches and several drinks of apple juice. We love to see an appetite develop and we hope it all stays put. He is improving each day and we are thankful for all of the prayers. Thanks to everyone that keeps up with his progress.

Monday, May 25th

Good evening to all. Hope everyone enjoyed the holiday. Carson and Cody enjoyed it at school while they made up a bad weather day. Clay had a wonderful day. He spent a good night in Grandma's care and was awake at 6:00 this morning. Around 8:00 he indicated that he wanted to get out of bed so he got in his wagon and we went down to the play room for a little recreation. He stayed in there for about 30 minutes and then went back to his bed. At noon he got up and walked down to the tank for his bath and wound care. He was taking tiny steps and his nurse Natalie asked him if he could walk like a dinosaur. He immediately started taking much larger strides. He returned from his bath driving the car in the hall. He was cleaned up and stepped out of the car and walked unassisted to his bed. He was placed in bed for all of 10 minutes. He decided the lure of the car was too great and he indicated that he wanted to get back in. I helped him out of bed and he walked to his car got in and drove back to the playroom. Upon arrival he really got busy. There is a play stove and cook top and he cooked several items for grandma and I to sample. He was cooking me a hot dog in the oven and the wiener fell out when he handed it to me. I showed him what happened and he took it and placed in the sink and indicated that he had washed it off and handed it back. He then took all of the play plates and placed them in the sinks and pretended to wash each one and put them up. The boys and I need him home because we are not very good dishwashers. He then went to the table in the play room and played a matching game with Grandma and I. He was the winner. I carried him back to his bed and he was content to be off his feet for a bit. When I left he had a bowl of apple sauce and his personal spoon and was really giving it a good tasting. We are happy to see him eat anything because it has been so long since he has. He is scheduled for a test at Children's tomorrow. We are not certain we are going to do it because he seems to have made such progress today. I am headed to the hospital for the night to relieve Grandma and let her get some rest. Thank you Joy/Grandma we could not have made it this far without your help. Thanks to all and good night.

Sunday, May 24, 2009

It's Aunt Jenae again...down in the southern hemisphere! DeeDee is dictating to me while she is driving back to Olney with Carson and Cody. Chance and Grandma are staying in the room with Clay tonight. We hope Chance gets the opportunity to get some sleep. A gastroenterologist came to see Clay today. He visited with DeeDee and asked her many questions concerning Clay's vomiting. He said it was a lot of information to process and he had to go over all the records and papers then let them know what should be done. We hope that will be soon. He vomitted several times during the night and continued to vomit throughout the day today.

He did not realize that baths/showers were going to be a daily occurence and he wasn't too happy about getting one today. Two techs come daily and take him to another room to bathe him and take care of his wounds. He is rolled back into the room in a wagon...sparkling clean! One of these days Chance and DeeDee will get to go in and watch as they bathe him and learn how to do it. They will be the "techs" when he goes back home :)

Carson and Cody were able to see Clay today. The same rules apply as in the BICU - no one who has had a cold or been sick, only 2 visitors at a time and no children in the room. They pulled him in his wagon to the end of the hall to see them. He was so excited to be able to show them some of the toys that he had access to in the playroom. He would have his mom and dad pull him in the playroom, he'd pick a toy, they would take him back to the end of the hall and he would wave the toy to Carson, Cody and Grandma to show them. It was like a magic show :) Go behind the doors and bring out another surprise!! He then did that several more times and by the 4th or 5th time he was completely worn out and ready for a nap.

Several visitors came today so that made for a good day. Clay slept for several hours during the time visitors were here and during the time relatives came. Chance and DeeDee just want to say thanks to everyone for all they have done. They really appreciate the thoughts and prayers of others.

Saturday, May 23rd

Hello again - another update coming from Omaha, NE (from Uncle Jace & Aunt Dana). Chance & DeeDee could not get online @ the hospital, so they will give more in-depth info tomorrow.

Clay's first full day in his new room in the Acute Care Unit was a good one. He had a restful night but Chance is a little tired after his first night with Clay because he was up at every noise. Chance has called in help tonight with DeeDee so they both get to spend the night with Clay.

After 99 days, Clay enjoyed his first shower and is loving having his parents with him at all times. Chance seems to believe that Clay enjoys having Mom and Dad as constant servants. Today there was no vomiting....YEAH!! The IV became clogged and it was removed early this morning. Some of the medicines were not administered since no IV and Clay did fine.

OT and PT came by and worked with him today. He walked down the hallway and waved at Aunt Lorna and Randi Brooke. Thanks to all who have shown support and continue to pray. Hope everyone has a good night.

Friday May 22nd

Hello all. Chance is at the hospital tonight without his laptop, while DeeDee is putting the other two boys to bed at the RMH. So this is Jace and Dana posting on their behalf from Omaha NE.

After 98 days Clay was finally moved out of BICU to a new room. He moved over around noon today. The last three months, Chance and DeeDee's lives have revolved around visiting hours and now they have the opportunity to spend their nights in Clay's room. This will take some adjusting but they are excited to have 24/7 access to Clay. It is a big step in the healing process but Chance and DeeDee are already missing the great care Clay received in the BICU.

The change has been hard on everyone. Clay was looking forward to moving because he would have access to the playroom, video games and more time to play. It has been frustrating for them because they are still unable to control the nausea and vomiting. The doctors have him on three medications to try to help, but it appears they have not been very effective which is disappointing. The doctors, at this time, will keep the current regime for several more days in hopes they can control his nausea in the future. The meds cause Clay to be sick at times and make him very sleepy. Unfortunately, Clay has had little desire to go play in his new environment and spent most of the day sick or sleeping.

Chance and the boys arrived this evening. Chance will be spending the night with Clay. DeeDee, Grandma, Carson and Cody are at the RMH tonight. Thanks again for all of your continued support and prayers.

Thursday, May 21st

Hello to all. Short post tonight from Olney. Clay was pretty good this morning he played with some toys that O.T. brought in and was proud of his accomplishments. Deidra and Joy came in to one visit and there was an ear, nose, and throat specialist from Children's doing an exam on Clay. They are going to schedule him a trip over to their hospital to do some test trying to pinpoint the cause of the vomiting. We thought this was an example of the BICU being cautious after yesterdays incident, apparently not. At 6:00 tonight Deidra was informed that Clay is scheduled to be moved out of the BICU tomorrow. He will be moved with the trach in place. Mom and Grandma started packing up some of his stuff tonight. He gave them his spiky ball that he sleeps with each night. They told him he could keep it until the move tomorrow. He said no and indicated he wanted it packed up. Grandma told him if he could get a good nights sleep he would be ready for the move tomorrow. He quickly shut his eyes. He is ready to go. Joy and Deidra had another surprise today. Kermit went home to Austin with his grandmother. He came by Clay's room to say goodbye and just missed Joy and Deidra. The nurse told Deidra and she ran down the stairs to say goodbye. She shed several tears with Kermit and his Grandmother but they were tears of joy. We wish Kermit a quick recovery and hope he enjoys being home with his loved ones. Deidra and Joy are back at the Ronald McDonald House getting clothes washed and some things together, because Deidra will get to stay the night with Clay once he is moved out of ICU. Tomorrow will be a milestone for Clay. I am sure God knows what is best for him and he will continue to improve in his care. Thanks to everyone for your post and concerns we appreciate all.

Wednesday, May 20, 2009

This is Jenae writing the blog tonight. Well, we thought today was going to be a good day.....we were wrong!! It has been an emotionally draining day. First, Cody was sick and Chance had to have a friend come and get him to babysit him. He had a bad earache and it was all the way down into the ear canal. They caught it early so that's good! That explains his crying all through the night. As for Clay....there was going to be a huge step taken today and that was to take the trach out. When DeeDee and Grandma (our mom) went in to the 5:00 visit the nurses said they had a surprise. When DeeDee walked into the room Clay said, "Hi, Mom!". Those were some of the sweetest words to hear. The trach had been taken out and DeeDee and Grandma (our mom) got to visit with Clay. He was watching cartoons, was telling them about the cartoons and other things. A few complete sentences were said anyway. All the nurses had been in the room to hear Clay's voice. They all loved to hear it! Halfway through the visit (about 30 minutes into the visit) he started vomiting. He could not get his air, turned blue and still. Grandma (our mom) was holding his head. The nurse ran to get the respiratory therapist & DeeDee was running to get help. Help arrived immediately. They had to do an emergency trach (in the same spot they had taken it out at) and bag him to breath for him. There were 7 or 8 people around the bed. They had to pump the air in him. He is not on a machine, but he has another trach. When they went back for the last visit he was itching all over and was miserable. The nurse was giving him Benadryl and he was shaking his head no. He thought it might make him sick. He had it anyway because the straight cast on his left leg is making him itch. The nurses said they would keep a close watch over him tonight and we know that God will keep him. DeeDee just wants all to know that she is in no condition to write the blog tonight. One of the most difficult things to see is when your child stops breathing. Breath is life and we are thankful that we are still in the BICU at a time like this. Thanks a million to all the nurses, respiratory therapists and doctors that have helped us tonight. There is no way to thank you enough.

Tuesday, May 19

Hello to all. We hope you all had a wonderful day. When we walked through the doors of the BICU, this morning, our night nurse (Alan) told us that he had some bad news. Before we had time to process these words, he told us the news. He and Clay played a card game during the night. He said "Clay lost the bet and owes me $40.00, so......pay up!" We laughed and said, "What card game did you play?" His reply was, "Old Maid". We are truly going to miss all of the BICU nurses and staff.
Dr. Arnoldo informed us of his plans for Clay. Clay will not have anymore major surgeries in the BICU. The doctors have decided to wait on doing another surgery on his left hand. Two or three months down the road, another surgery will have to be performed. His trach will be removed soon and then he will be moved out of ICU - such great news and progress! Once he is moved out of ICU, his occupational and physical therapy will be a major part of his recovery.
Clay sat in his wagon and chair for a short time today. He counted some airplanes and asked for grapes. We made sure that we had some grapes for our next visit. He ate one grape (piece by piece) and savored each tiny bite. We were informed that his grape came back up after we walked out. We also read a lot of books this afternoon. His "green" cast, that P.T. put on yesterday, was cut off so that his donor sites could be examined. A new green cast was put back on this afternoon. Kermit told P.T. that he wanted to go see Clay. He walked all the way from his new room to the BICU. What a special, sweet friendship.
Clay was sound asleep during our last visit. Hugs and special thanks to all!

Monday, May 18

Greetings ~ we hope you all had a good day. I talked to Carson and Cody earlier and they had a good day at school. Cody's class took a field trip and he was telling me all about it. Carson told me about all of his end-of-school activities planned. School will be out before long. Clay had a busy day, too, in ICU. His night nurse (Jason) said that he had an "awesome" night. He had 4-5 bouts of emesis (vomiting); other than that, it was a good night. He played with his soft spike (Koosh) ball, laughed, and got a little sleep. His nurse told us that it was good to see Clay's 5-yr. old spirit showing. When we arrived for the next visit (8:00am) Clay's day nurse had him in his wagon. We pulled him to the window and counted airplanes with him. He was coughing up a lot of secretions, at this time, and wanted to return to his room. He likes to be close to his suction tube when he feels sick at his stomach.
He had quite a bit of pain medication today. He has scar tissue behind his left knee which causes him to want to draw his knee up. His P.T. placed a green cast on his left leg. His O.T. placed another cast on his right hand. His nurse taped a suction tube to his cast so that he could suction his saliva when he wanted to. He cried and reached for me when we had to leave at the end of our visits. I cried too and his nurse told me that this is part of the healing process for him. At our last visit of the day, I held a cool washcloth on his forehead until he closed his eyes. Then I slipped out quietly. He did not sleep much today, so I hope he will tonight. Good night and special thanks to all!

Sunday, May 17

Hello to all! Chance and the boys are headed back home this evening. It was so nice to spend the weekend together. It's hard to believe that this school year is almost over.
Clay had a busy day. The dressing covering the back of his head has come down, and the grafts have adhered nicely. They also took some x-rays of his left hand and the doctors will make a decision this week about the surgery. When we arrived for our 11:00am visit, after our Sunday morning fellowship meeting, Clay was in his wagon. Carson, Cody, and Grandma were outside the ICU doors. His brothers put on their gowns, masks, and caps and were able to visit him outside his room. We pulled his wagon to the end of the hall and his brothers sat beside him for a little while. It was touching to have the boys together again and share this precious time with each other (many feelings in our hearts). Clay was able to say their names when we placed our finger over his trach.
Clay's nurse took him (in his wagon) to the break room and let him pick a drink out of the fridge. She said that his face lit up when he spied some chocolate milk. She let him hold it and sip it while cruising around in his wagon. He was anxious to show us what he was drinking when we arrived. A gentleman from Corinth, TX builds custom-made toy barns. He made one for Clay a few weeks ago and we were not able to put it in his ICU room. We have it at home and Clay's brothers have enjoyed playing with it. Clay will enjoy it too, as soon as he makes it home. A barn was also made for Kermit. We pick it up today and took it to Kermit's nurse. She set it up on a table by Kermit's bed while he was asleep. When he woke up he yelled "Nurse, Nurse look at this!" We thought this was a pretty cute incident to tell about. Kermit's ICU room was empty this evening because he was able to move out of the ICU today. Clay is going to miss his little buddy, but will get to see him again when he is moved from ICU. Hopefully Clay will get to move soon.
Some friends brought Clay a battery-controlled jeep to drive around, when he's feeling good. He was allowed to circle the ICU a few times in it and wanted to park it in his room. This is against regulations, so Chance & I carted this thing all the way back to the parking garage. We were really getting some curious looks from bystanders. We had several visitors today, and it was good to see all. Clay did not sleep much today; so, maybe he will sleep soundly tonight. He is coughing up some thick secretions; but, he only had one episode of emesis (vomiting) today. He's getting better each day. Hope you all have a good night & thanks again.

Saturday, May 16th

Hello to all. This is Chance. Clay worked hard today and spent the majority of his time awake. Stephanie was his nurse and they had a good day. He was awake at 6:00 this morning and when I walked in he held both of his arms up and gave me a big hug. I can't think of a better way to start a Saturday. When I came back at 8:00 he was already in his wagon and sitting down by the window. I was surprised to see him out of bed so early. Stephanie said that apparently he was not going to stay in bed today because he was trying to get up with or without her.
Physical therapy was in right after 8:00 and they came down to walk Clay. His left leg has some open wounds from the donor sites and there is quite a bit of scar tissue behind his knee and on his hip. It is very painful. He had to have a morphine bolus before therapy could unwrap and place the leg wraps on it. When the time came to walk it was very difficult, he would have hopped on his right leg all the way if it would have supported him. This was hard as a parent to watch, but I am thankful he did not stop. The therapist said he is much tougher than most of her adult patients. We had a good visit at 11:00 he was pretty thirsty. At 2:00 he was back in bed and supposed to be napping. He was not sleepy yet and was awake the entire visit. At 5:00 he was back near the window in a recliner and he was sound asleep. He went down to color a picture and a few minutes into the project he was out like a light. He woke up before the visit was over and Deidra and I helped put him back into bed. He was awake at the last visit and we hope he will get a good nights rest starting shortly after we left. He can enjoy a Sunday of freedom because we have been told on Monday they are going to place a cast on his right hand to bend it into a fist and on his left leg to straighten it out. We hope everyone has a good Sunday. We are comforted each day knowing he is in so many prayers, and that God is his constant companion. Good Night

Friday, May 15

Hope everyone had a great day. Clay had a busy day. He sat by the window (in his wagon) and watched for airplanes this morning. He was nauseated some today but only vomited once. His stomach was hurting during our 2:00pm visit. He wanted a cool washcloth on his head, stomach, and knee. I placed a cool, folded washcloth on his forehead. He reached up and pulled the washcloth over his eyes, nose, and mouth. I immediately pulled it up off of his mouth and nose, thinking that he would not be able to breath, and he immediately pulled it back down. Then I realized that he breathes through his trach tube and the cool washcloth was not hindering his breathing. His nurse was showing us some pictures from one of her trips during this time. Every once in awhile, Clay would lift the corner of the washcloth and take a peek. :-)
The child life specialist brought over a battery controlled jeep for Clay and Kermit to drive after they walked with the Physical Therapist. Neither of the boys felt like walking so P.T. figured that the jeep would be a good incentive. Kermit drove it first, after he walked. Then he didn't want to get out of it, so he drove it down to Clay's room and scooted over so Clay could drive it. Clay had to walk down to the window and back and then he got in with Kermit. They drove around the BICU and then out the automatic door into the hall. This trip wore them out for the day. Hope you have a good weekend! Thanks and good night!

Thursday, May 14

Hi to all! I apologize for posting this so late. We say our prayers and get ready for bed before we type on the blog. This is why it is late at times. Clay was awake when we arrived for the first visit this morning. Jason (his night nurse) told us that Clay woke up at 1:00am and played with a flashlight and his soft spike ball. He was sick at his stomach twice last night and again during our first visit. His secretions are thicker today and it is harder to cough them up. I think that Clay gets nauseated from the anesthesia, too. He did not feel like doing much today, and was still recovering from surgery and the effects thereof. During our 11:00am visit, Clay and Kermit were propped in their wagons. They were taking turns playing a game with a joy stick. Clay did not have the energy to play very long. He slept for most of the afternoon. We are thankful for healing. Special thanks to all!

Wednesday, May 13; Surgery XIII

Hello to all! Clay went to the O.R. at 10:00am. He slept through the night and did not wake up until it was time to go to the O.R. The doctor said that Clay's surgery went well. He was coming off of the anesthesia when they brought him up from the O.R. He was in pain; so, a doctor was giving him pain medication as they were rolling him down the hallways. Upon arriving to his room, his nurse sedated him. He was awake, but groggy, during our 5:00pm visit. He was allowed to have a little drink of apple juice and we had no vomiting today. Yeah!
Clay is a participant in a research study. We were asked to take part in this research study and signed the consent forms this morning. This study is being done to determine if use of the new burn wound dressing heals skin graft donor sites as well as current treatment. Patients have reported that this new dressing is less painful on donor sites. Skin was taken from Clay's calves to graft the back of his head. Two different dressings were placed on the donor sites. The current wound dressing has healed all of Clay's previous donor sites really well. If this new dressing is less painful, with better results, we were willing to give it a try.
Have a good night and thanks to all!

Tuesday, May 12th

Good evening. This is Chance here for tomorrow's surgery. Clay can chalk up another day in the BICU. He was asleep this morning at 6:00. He was still in bed at 8:00. Debbie was his nurse and she fixed an additional suction tube up so Clay could use it anytime he needed. There were several doctors that came in at the end of this visit. Clay was a little overwhelmed by all of the strange faces, and was upset when Mom and Grandma had to step out. At the 11:00 visit occupational therapy played several games with him. He likes to play but quickly wears down. After lunch Mom was able to pull Clay around in his wagon. He seems to enjoy seeing new sites. He was resting at the 5:00 visit and was still asleep in the wagon when we went in to visit at 7:30. Deidra and I asked the night nurse if we could help her put him in his bed. She seemed to welcome our help and we quickly had him situated and ready for a good nights rest. Clay was still having issues keeping his tube feeds down and he did not feel good all day. We are praying for a restful night for him and a successful surgery tomorrow. He is the second procedure on the schedule and will probably go to the O.R. around 10:00 a.m. Please keep him in your prayers. Good night

Monday, May 11

Hello to all. We hope you all had a good day! The homografts on the back of Clay's head have adhered well. We were told today that Clay will go back to the O.R. on Wednesday morning. They will take off the homografts and place autografts (his own skin) in their place. He will have a longer period of healing after this surgery. He will have donor sites that will need to heal as well as the back of his head. If these grafts adhere, this will be the last of his surgeries for awhile. We were told that he will need to have more surgeries on his left hand. The doctors will discuss this at a later date.
Clay's Occupational therapist made another new cast for his right hand today. A new cast is made each week. He is not able to make a fist with his fingers; therefore, the casts help to bend his fingers down. When we arrived for the 11:00am visit, Clay and his nurse were hiding behind the nurse's station. He was in his wagon (propped up with many pillows). They came around the corner and scared me - Clay thought this was so fun! Then, Bonnie (his nurse) pushed his wagon while he steered. They circled the ICU about three times. Bonnie asked Clay if he wanted to go fast and he nodded his head. We were allowed to circle the ICU with them and helped him steer. He waved to Kermit as he passed his room. His Occupational therapist set up a new game in his room and he was so excited.
At our 2:00pm visit, Clay walked around the ICU at a fast pace. His Physical therapist told him that she could hardly keep up. He was placed back in his wagon, and his nurse took him to the playroom. He was playing a board game with her and got tired in the middle of the game. He then wanted to go back to his room. All this play time makes a little guy tired! During our 5:00pm visit, Bonnie and Arnie were busy making both Clay and Kermit a guitar. They made the guitars using boxes, elastic, and tape. Bonnie had a busy day with Clay and will sleep well tonight. :-) Clay was asleep during our last visit, and we hope he sleeps well too. We hope you all get a good night's sleep as well. Thanks so much!

Sunday, May 10

Happy Mother's Day to all you special mothers! I had a special Mother's Day because I was able to be with all three boys today. I got to be with Clay during our visits and with Carson and Cody at the Ronald McDonald House. Carson and Cody were anxious to give me their sweet Mother's Day cards that they made at school. Chance went to see Clay at 6:00am while Carson, Cody, Grandma, and I slept a little longer. Chance had Clay sign a Mother's Day card and told him to hide it under a pillow until the next visit. When we arrived for the 8:00am visit, we stopped to talk to the nurses outside of Clay's room. Clay saw us and began to wave the Mother's Day card in the air. It was so sweet. He had been waiting for an hour to give me the card.
He had a restful Sunday. We went to our Sunday church meeting, and when we arrived at the 11:00 visit, he was sitting in his chair. He sat his chair for a few hours and then was moved back to his comfortable air bed. He took a few sips of apple juice this afternoon. He was rubbing his stomach and indicated that it hurt. Although, he did not vomit today. We are thankful that his little stomach is, at least, getting relief from the vomiting. He was sleeping during our last visit of the day. I hope he has a restful night.
Through this blog, we feel like you have all been with us. Thank you for your prayers, thoughts, and words of encouragement through this unimaginable experience. Carolyn stated in her post how she feels that God has brought us all together through Clay. This has been our thought too. Many tears have been shed: tears of worry, tears of heartaches, tears of thankfulness, tears of joy, tears of weariness, tears of encouragement - we know that God feels it too and are thankful each day for His continued comfort.

Saturday May 9th

Hey everyone this is Dana, DeeDee's sister, typing from Omaha. The Internet is down @ the Ronald McDonald House, so Chance & DeeDee are not able to get online.
Clay didn't have a very restful day. Chance went to the first visit this morning & Clay had been vomiting through the night & again when Chance got there. They did the dressing change a little earlier than usual to get Clay cleaned up. The nurse sat him in his chair today but he didn't feel good & wanted back in bed. They changed his feeding tube to a more concentrated formula to help control his sodium level.
Clay & Kermit received a nice surprise today from a generous group of people in Graham - they each got their own Nintendo DS!! This was a bit confusing for Mom and Dad to setup so they made a special trip back to the Ronald McDonald House. There, they had to rely on their 10 yr old Mr. Carson Fite to get the sophisticated game setup;) Clay says thanks Carson. Clay and Kermit didn't feel like getting out of bed but were both very happy to play their games - it was good therapy for Clay's hand. He wanted his feet tickled during the last visit & was sad when his parents had to leave.
Chance & DeeDee want to send their thanks to all!! Hopefully Clay has a restful night tonight.

Friday, May 8; Surgery XII

Good evening to everyone! I (DeeDee) am going to post the blog before our last visit this evening while I can use the RMH computer. For some reason, I was not able to connect to the Internet on my computer last night, and it was too late to use this RMH computer. It was a pretty quiet day in BICU today because Clay & Kermit had surgeries. When I arrived at 6:00am, Clay's nurse told me that they had already called from O.R. to prep Clay for surgery. Clay ended up being the first case to go to O.R. instead of second case. He was taken to O.R. at 7:15am. Chance arrived shortly after and was able to see Clay when he came back from O.R. Clay did not have to be placed on the respirator after surgery, and was awake when we entered his room. We had some friends visit, before lunch, and Clay was able to look at the books they brought & interact some. He has a thick dressing covering the back of his head, so he did not move much today. We know how important rest is when we are recovering. His occupational and physical therapists did not come today because of the surgery. During one visit, my mom and I were hot so we were looking for Clay's little fan. We were busy looking for it all around the room. We sat down beside Clay's bed with no luck in finding the fan. Clay pulled his little hand out from under his covers with the fan in his hand and a smile on his face. :-)
He is still sick at his stomach. He vomited 4 times throughout the night and several times today. The doctors have changed some of his medicines to see if this helps. We are on our way back to the hospital to give him a goodnight kiss. We hope you all know how much you are appreciated!

Thursday, May 7

Hi, everyone. This is Julie. Dee Dee is having computer problems, and the computer room at the Ronald McDonald house was already locked, so she asked me to post tonight. Clay had a pretty good day. The speech therapist, OT, and PT all worked with him today. He walked ALL the way around the ICU today!!! This is a REALLY big circle, and is the farthest he has walked so far! He tried to go fast to get it over with quickly. Upon returning to his room, the nurse jokingly said, "Ok, Clay, hop back in bed". And guess what? He did! He hiked his knee up and pulled himself up on the bed. The nurse and PT were amazed! The PT helped him reposition in the bed. After all this activity, he slept most of the afternoon. He didn't have any Hydrocodone today, but still vomited twice. He wasn't interested in eating today. He even turned down chocolate ice cream. Dee Dee asked him if it hurts when he swallows, and he nodded yes. He was awake and sitting in his chair at the 2:00 visit, and he and Dee Dee played with silly putty and balls. He was very excited about the silly putty because they don't usually get to play with it at home! Clay is scheduled to have surgery on the back of his head tomorrow. His is supposed to be the second case in the morning. At the last visit tonight, he was awake and sad and didn't want them to leave. Dee Dee asked me to again thank everyone for their support, love, and especially prayers. Good night and God bless!

Wednesday, May 6

Hello to all. We were told that Clay will have his next surgery Friday morning. Dr. Arnoldo will place homografts on the back of Clay's head. In a week or two, they will take him back to O.R. to remove these grafts and place autografts (his own skin) in their place. We have been worried about the back of his head and are relieved that it will finally be covered and begin to heal.
Clay had a busy morning and a restful afternoon. Clay was sick to his stomach three times today. His nurse noticed a correlation between his vomiting and his pain medicine. Each time he was given hydrocodone, for pain, he vomited within minutes after it was put down his feeding tube. He is still receiving a small amount of morphine through his IV. Extra pain medication is given before wound care, etc. Kristen, our O.T., made Clay another cast for his right hand. Uncle Justin (my brother) came to visit Clay at 11:00am. This was Clay's busiest hour of the day. The speech therapist came to work with Clay. She would place a cap over Clay's trach and ask him to say a word. It will take some time for him to get used to having air pushed over his vocal cords again. He gets really anxious each time the cap is placed over his trach. He then was taken to the big window where he watches for those airplanes taking off at Love Field. He also wanted to show us a new trick. While lying in bed, he can pick up his soft, spike ball with his little toes. We were laughing and he was smiling - it was really cute. He was asleep during our afternoon visits and wide awake during our evening visit. We hope you all have/had a restful night ~ thanks to all of you!

Tuesday, May 5

Hello to all. I think Chance and Arnie wore Clay out yesterday because he slept a lot today. :-) His little body has been working so hard, so I like to see him resting peacefully. He was awake during our 11:00am visit and got to go to the playroom. The occupational therapist was waiting for us when we arrived, and she had the Wii set up for him. She placed the remote in his hand and showed him the correct buttons to push. He played a boxing game which required him to move his right arm back and forth really fast. All this exertion made him tired and he fell asleep right there in his chair, so we took him back to his room. The physical therapist walked him before our 2:00 visit. She said that Clay did not want to walk, but did it anyway. He walked down the hall faster than usual and wanted back in his bed. He was asleep during our 2:00 and 5:00 visit. Some friends brought dinner to us this evening, and they also brought a big soft bear for Clay. He was awake during our last visit and wanted this new bear on his bed. Before we left, he patted his stomach and motioned for us to place the bear on his stomach. The bear was almost as big as Clay and he was smiling as we left the room. I just want to pick Clay up and give him hugs and kisses. When I have to leave the other boys, I can't get enough hugs and kisses. I'm so thankful for the comfort we have in God. We're thankful for your prayers and for Clay's progress.

Monday, May 4th

Early post tonight. Clay had a busy and good day. He is starting to sleep all night and likes to sleep late in the mornings. Occupational therapy was ready to go to work at 8:00 and Clay was not fully awake yet. I helped wake him up. He sat on the edge of the bed for a bit and then played with monkeys in a barrel. When this was over he was awake and ready for more. He did several more exercises but my favorite was when he had to move his arms like a chicken. He gave it a good try and I clapped. The O.T. did work with the left hand and I received my first good look. Not pretty but hopefully functional. She had the rehab doctor come and visit with me about the options for this hand. Speech therapy showed up next and Clay really took this opportunity to show off. I always knew that talking was his strong suite. They capped his trach and he said several words and counted to 10 twice. The most exciting part was when he asked to have the cap placed back on and told me, "I want macaroni." Needless to say I went all over the hospital to find him some. After speech left he was ready for another trip to the play room, but we told him he would have to wait until he had walked. He was not very excited by this prospect, but walked to the window and then back past his room and down to Kermit's. As soon as he returned to his room and set down in his chair he forced air over his trach and said playroom. Off we went. After all the activities he was ready for his bed. Arne and I settled him in and he found some good cartoons. At the last visit he had a dinner tray. He was willing to try everything but nothing taste good yet. I am headed back for the 7:30 to say good night and Deidra and Grandma are headed this way to take over here. Carson , Cody and I will try to hold down the fort in Olney until we can return this weekend. Thanks to all and good night.

Sunday, May 3rd

Hello to everyone. Clay had a good day. He is much more alert and sometimes becomes frustrated when we cannot understand what he needs or wants. He slept late this morning. When Deidra and I returned from meeting he was in his chair and preparing to take a trip to the play room in the Acute Care Burn Unit. Arne had him ready to make the trip so we all went over together. He had a nice time but he was extremely disappointed that they did not have the Wi hooked up on Sunday. We were amazed that he remembered this because it had only been mentioned to him a couple of times. He was very clear in mouthing the word Wi to his mother and I. Upon returning to the BICU he went down and counted a few airplanes. As we prepared to leave one of the nurses went to the freezer and pulled out a box of Popsicles. Clay picked strawberry and we were told he ate the entire thing. Thanks to Arne and Bonnie. His nurse has an I phone with several kids games loaded on it. Clay played with it non stop until Arne finally had to go to work and do his nursing duties. We see improvements each day and we are thankful. Deidra, Grandma, and the boys went to Olney tonight. This will be only be the third time Mom has been home since the accident. Please continue to pray for Clays recovery. Thanks to everyone for all the gracious help.

Saturday, May 2nd

Hello to all. Sorry for the late post tonight. Clay had a pretty good day. He played several games with his occupational therapist. He has a new set of magnets that he really enjoys. He and I had a couple of serious fights with his toy dinosaurs. His always seemed to win. Mandy his physical therapist rotated out of the burn unit today. She had helped Clay through several steps and will be missed. She walked him to the window and back for the last time. Clay was told if he walked to the window he could come back to his room and sit down. He went straight to the window and skipped his usual rest and turned and raced back to his room as fast as his weak little legs would carry him. He knows the faster he gets it over with the less pain he has to endure. Deidra visited with the O.T. who told us that they had taken more of the fingers than we had thought. This was disappointing, but he will overcome the loss. Today was the 100 year centennial celebration for our home town of Olney. A coworker of mine had a muzzle loading rifle that was made several years ago by the Olney gun works. She donated the gun to a raffle for Clay. I purchased several tickets and put them in Carson, Cody, and Clay's name. I took a phone call as we were going in to see Clay at 5:00. The ladies that worked on the drawing wanted to let me know that Clay was the winner. When we went in and explained it to him he attempted to grin from ear to ear. His mouth is very tight and his smile are precious. Thank you to everyone in Olney and elsewhere that have helped the Fites and Clay. Please know we will be eternally grateful. I would like to wish everyone a pleasant and relaxing Sunday. Good night.

Friday, May 1st

Hello to everyone this evening. Tonight is a joint effort between Deidra and myself (Chance). The boys and I traveled back to our second home and arrived around 8:00 tonight. I have not become accustomed to Dallas traffic. Clay has a new cast on his left knee to keep it straight. He has a burn scar high on his left leg and the most comfortable position for him is to bend his leg up. DeeDee makes sure that he has his orange soft spike ball near his feet for comfort and self tickles. He sat near the window today and counted airplanes in and out of Love Field. Bonnie was his nurse. They brought his lunch tray while he was at the window. He elected to dine outside his room. Mom and Grandma watched as Bonnie helped him sample everything on his tray. He was not interested in any pureed food item until she got to the ice cream. This brightened him up a bit and he indicated he would like some more of it. Sounds like his brothers.
Several speech therapist came in today and Clay had some anxious moments when they covered his trach. He did not feel like he could breathe easily. It was a panic for a little bit, but they talked him through it. It feels different for him since he has not had to force air over his vocal chords for so long. When they cap the trach, he has to get used to breathing through his mouth and nose again. They did not leave the cap on today. They will come next week and place a cap, with a valve on it, over his trach. This will allow him to breathe air in through his trach tube, but force the air out through his mouth. It will take some time for him to get used to it. He was able to say "dad", "mom", "ahhhhh", and "bye". Some of the other nurses came in to hear him talk and clap for him. During the 5:00 visit, Bonnie was going to take him to the play room. He was sitting in his chair and pointed to the bed. He wanted to get in his bed instead of going to the play room. He had a busy day and wanted to sleep. At the last visit he realized it was dark outside and he did not want Mom and Grandma to leave. DeeDee went back in and gave him a hug. I think there were tears being shed by both Clay and Mom. All and all Clay had a busy day with the speech milestone being one we hope he can build upon in coming days. We pray each evening that the Lord will continue to strengthen Clay and comfort him when we are not in the room. Sweet dreams to all.