Sunday, December 20, 2009

Monday, December 21

Hello to all! We just wanted to give a quick update on our doctor visit this past Thursday. The skin grafts that we were worried about looked great and adhered perfectly. We were told that it was normal for the top layer (of skin) to slough off - this was the part that we were so worried about. We are very relieved and are thankful for the great job that Dr. Bidic did. We are also thankful for Kaylee and Savannah (Dr. Bidic's PA's) who have helped so much with Clay. We are still keeping a light dressing over the neck and treating the areas of hypergranulation (overgrowth of granulation tissue) around Clay's trach.
On one of our frequent trips to Dallas, a few weeks ago, we took Clay to Parkland to see the nurses in the Burn ICU. It was great to see them and they were glad to see Clay. We were also able to attend the monthly "burn support group" meeting at Parkland hospital this past Saturday. Two OT therapists that helped Clay, while he was in the burn unit, attended the meeting. We told them "thank you" for being so aggressive with Clay's therapy from the start. We now understand that Clay's therapy is so essential throughout the healing process and beyond. Thank you to all the therapists who have and are working with Clay.
We hope you all have a wonderful week and nice holiday! Thank you again - our hearts are filled with gratitude.

P.S. We will be sending the letters within the next few weeks - thank you for your patience with us! :-)

Wednesday, December 16, 2009

Wednesday, December 16

Hello to all! I had a minute so I wanted to post an update and apologize for our sporadic postings. As you recall, Clay had his neck release surgery on Nov. 9. He had a wound vac dressing on his neck and carried the pump with him for about a month. During the month of November, we took him to Dallas for four dressing changes. They had to sedate him each time they changed it; therefore, it was basically like a day surgery (OR, anesthesia, recovery room, etc.). On December 3, they took him back to the OR and placed skin grafts over the Integra (neck) and then placed the wound vac over the grafts. We took him back to Dallas on Dec. 9 to have the wound vac removed. He was so relieved to have it off that he was jumping around saying "I'm free, I'm free." The grafts still needed to have a dressing over them for awhile and we were told how to do this dressing change at home. Clay's PT comes to our house on Thursdays; so, she helped us with the first dressing change. She was able to come back to our house on Friday (Dec. 11) to help; and, we ended up calling and sending pictures to Clay's doctor because there were areas of the grafts that were not adhering. We have continued to change it each day and we are not sure if there is enough skin attached to grow and cover the neck area. We go back to Dallas tomorrow (Dec. 17) and the doctors will tell us more. We are not sure, at this point, if they will have to place another skin graft on Clay's neck. There are also some areas where the tissue is hypergranulating (big word I learned this past year).
This is the last week of school before the holidays. Carson & Cody have early release days tomorrow and Friday. Clay's homebound teacher was able to complete his lessons on Monday and Tuesday. Depending on the weather, we may be going to Omaha, NE next week to see Jace & Dana (my twin sister, her husband, and girls). We also would like to stop in Wichita, KS to see the family of Larisa (a friend that was burned in October). We have been following her blog since her accident We want to thank each one of you for your encouragement this past year.
We are planning on sending a "New Year" letter out with pictures of Clay's progress & pictures of Carson and Cody. I'm sure that you all would like to see the progress that Clay has made since February. Since we do not feel comfortable in posting his pictures online, we will send these letters via "snail mail". :-) Thanks for everything!

Friday, December 4, 2009

Friday, December 4th

Quick update before the day slips away. Clay's surgery went well yesterday. So well that he has been at home with Mom all day today. We had planned to spend last night in the hospital, but the Physician's Assistant came out of the O.R. and told Deidra and I that Dr. Bidic thought Clay would be able to go home after the procedure. They took two strips of skin from his upper right thigh and placed them over the Integra on his neck. We anticipated them being very painful and they were. They placed his wound vac back on his neck to keep the grafts in place. When he awoke in the recovery room he immediately started complaining and crying that his leg hurt. Our recovery nurse was very attentive to his pain and put several doses of pain medication into his IV to get it under control. Clay was disappointed that he was not going to stay in the hospital overnight, because he wanted to watch cartoons and eat popsicles in his hospital room. Mom and I were not disappointed at all. We left the hospital around 6:00 p.m and arrived home a little after 9:00. Clay had one bout with nausea on the trip home but it quickly subsided and some food seemed to solve the problem. He slept well at home and rested all day. He asked this morning if his brothers had school today? When I said yes he told me, "I need someone to play with." We would like to offer a special thanks to all of the Doctors and staff at Children's that have helped Clay. We appreciate the care he has received and the extra efforts that have been made on his behalf. Thanks to everyone keeping up with Clay. We will post more specifics when we can.

Wednesday, December 2, 2009

Wednesday, December 2

Hello to all! Clay and I went to Dallas on Monday for his dressing change. He is scheduled for surgery tomorrow (Thursday) at 1:00pm at Children's Hospital of Dallas. He has had a wound vac on his neck for about 23 days now. If you recall, it takes 3-4 weeks for the Integra product, on his neck, to generate a dermal-like tissue & accept a skin graft( They will take skin grafts from his legs (donor sites) and place them on his neck tomorrow. From his 4 month burn unit experience (Feb.14-June 15), these donor sites have proven to be the areas where he has experienced the most pain (superficial wounds). I think about the times when I have accidentally cut my legs, when shaving, and how painful it is. Clay will feel this pain on large areas of his legs, because they will shave the top layers of skin off to place on his neck (thank goodness for pain meds at this time). He underwent many surgeries, in the burn unit at Parkland, for skin grafting. This will be his third surgery since he was released from Parkland in June and his second "skin grafting" surgery outside of the burn unit. We hope he recovers well. Remember all the weeks when he vomited while he was in the burn unit & we couldn't pinpoint what was causing it? Clay has had four dressing changes since Nov.9, and each time they change the dressing an anesthesiologist has had to sedate him. He did okay with the the anesthetics used on the first 3 dressing changes, but he was sick all the way home on Monday because of the anesthetic used. We will ask what drug he was given before surgery on Thursday.
Thank you for remembering Clay and our family this past year-we are grateful for each one of you!

Sunday, November 29, 2009

Sunday, November 29th

Hello to all. I hope that everyone had a wonderful Thanksgiving. We had a nice day and are so thankful to be home and with all of our family. You don't appreciate the small things until they are taken away from you. It is good to have all three boys underfoot. We usually head to South Texas for Thanksgiving but we had it in Olney this time. There was plenty of good food and we enjoyed the visit with everyone who came. Clay and Deidra are headed back to Dallas tomorrow, minus grandma who has been here helping, to have a dressing change done on his neck. We are not sure of his next surgery date but we expect to have it set after tomorrow's visit. The wound pump that Clay carries with him is very temperamental and we have usually exhausted our tricks trying to keep it functioning between the dressing changes. Clay seems to be doing well. On Thanksgiving day after lunch his brothers and cousins were playing in the arena. Clay said he was going out to play. We watched as he scaled two pipe fences with his wound pump tucked in his backpack. When he reached the ground on the other side he took off running to join the fun. Apparently all the therapy is paying off. He eats like a horse and is very active. We realize that there are still many battles to be fought but we know that the Lord has a plan for Clay's life and we as parents have to help any way we can. We miss all of the contact with everyone who graciously comments on the blog, but we are thankful that God and Clay are steering us back toward a semblance of normalcy. Take care, and we are always thankful for the prayers, help, and encouragement we have encountered on this journey.

Thursday, November 12, 2009

Thursday, Nov. 12

Hello to all! Sorry for the delayed post. Clay had surgery Monday of this week at Children's Medical Center in Dallas. He arrived at 11:00 a.m. and went into the operating room at 12:30. He was in the O.R. for about 2 hours and in the recovery room for another hour or so. The procedure was done to release the burn scars on his neck and chin. As we have said in the past all burn scars contract and for the past months Clay has been unable to raise his head. He really had no chin or neck to speak of. His skin had pulled his lips and chin down to the point where there was only a centimeter and a half from his chin to his trach. After the surgery there were 13 centimeters separating the trach and the chin. When they let us come into the recovery he was still asleep from the sedative. Deidra and I were shocked and thrilled to see him sleeping on the recovery bed with his head stretched out and lying flat against the bed. We have become so accustomed to him walking around with his little head down that we had forgotten what his regular head and neck position was supposed to look like. Clay had a little bit of more good luck in the operating room. Clay has had a loose tooth for quite sometime and he would not let anyone help him pull it. During surgery he lost this tooth and one of the doctors told us that the tooth fairy came to the O.R. and left him six dollars and put his tooth in a jar for him. The doctor was very pleased with the procedure and told us that the Integra product was the way to go because he was not limited by lack of skin(you can google this product sometime-it's pretty interesting). Clay is wearing a Wound Vac pump over the bandage and a C collar neck brace. The wound vac attaches through a hole in the neck brace right above where his trach comes out. The Wound Vac provides constant suction to the wound and Clay will carry this machine everywhere he goes for a month. These are quite a few contraptions for a 6 year old. On Tuesday the resident doctor told us that we could plan on going home. We anticipated discharge around noon. To make a long story short we had to wait on a portable Wound Vac pump and were not able to leave the hospital until 11:15 p.m. on Tuesday night. This made for a late night or early morning back to Olney. We are thankful to be able to spend a few days at home. Deidra and Clay are back to Dallas tomorrow (Friday) for wound care. Clay will have to be sedated and it will be like a minor day surgery to do his dressing changes. He is very uncomfortable and hopes the time goes by quickly until the next surgery when they will graft his skin over the Interga on his neck. He will have to wait for four weeks until the next procedure. We are thankful that he is progressing and we truly appreciate all of the help and prayers of family & friends.

Saturday, November 7, 2009

Saturday, November 7

I had a few minutes this morning, so I wanted to post something that touched my heart. Cody, Clay, and I were sitting at the dinner table last night (Chance was in Oklahoma for business and Carson was at a 4-H judging contest). Cody was worrying about Clay's surgery on Monday & was also wondering if he could just miss a few days of school to sit with us at the hospital. I reassured him and told him that there was no need to worry about tomorrow until tomorrow comes. I then said, "And this could be the day that the Lord returns." Then Clay said "Oh, I hope this is the day because then I will have a new body." The things that children say touches the depths of our souls.
We will get Carson & Cody to school Monday morning and then head to Dallas. We are to be at Children's Hospital by 11:00am. Clay will have his pre-op and then head to the O.R. at approximately 12:30pm. We are not sure how long the surgery will take, but he will stay in the hospital overnight. My twin sister has been really sick; so, my mom is in Nebraska helping them with our nieces. My mom has been away from home so much this year-thanks, Dad, for holding down the fort while she has been away. The boys will be staying with some friends here in town. We are grateful that we have many wonderful friends willing to help with Carson & Cody. Thank you so much! We are very thankful for all the help and encouragement near and far.

Tuesday, November 3, 2009

Tuesday, November 3rd

Hello to all. We had some good news and a bit of a surprise yesterday, and wanted to keep everyone posted. Clay and Deidra went to Children's in Dallas for a follow up appointment. They were hoping to be put on the schedule for the neck release. We felt that time was of the essence and we were not sure we were going to be able to have it done before December. Deidra called yesterday around 1:00 p.m. and said that they have scheduled the neck procedure for next Monday, November 9th. We are thankful they could accommodate us and give him some relief sooner than we anticipated. The doctor was pleased with the results of his work on the hand. He has written orders for Clay to see a hand specialist for rehab. Deidra is trying to set up those appointments today. Deidra and Clay are staying busy with doctors, rehab, and school. Cody and Carson are just busy being second and fifth graders. Carson is on his way to a livestock judging contest this weekend at Texas A&M. I am trying to get our cows AId and hopefully sow some wheat if it every dries out enough to get back in the fields. Hope everyone is well. Thanks for all your help and comments. Come see us whenever you can.

Wednesday, October 28, 2009

Wednesday, October 28th

Hello to all. We realize it has been a while since we have posted. Don't think we have been idle. Last week was quite busy for all the Fite's. Clay completed his 40th trip to the hypebaric oxygen chamber. He now is able to sleep a little later each day. On Wednesday Deidra, Carson, Cody, and Clay packed up and headed to Mt. Peak Convention near Midlothian. On Thursday Clay had double doctor appointments in Dallas. I left Olney about 5:30 a.m. and picked them up at the convention grounds. Carson and Cody stayed at convention under the watchful eye of relatives. Our first appointment was at Children's where Clay had the cast he has been wearing for the last 6 weeks removed. We then were able to see one of the hand specialist who removed the pins from Clay's fingers. Clay handled the procedure well, but Mom took it pretty hard. After the pins were removed they built Clay a new splint for his left hand. He is supposed to wear it whenever he is not exercising or bathing. It is still very sensitive to touch and he is pretty protective of it. He has been working his good finger and we hope he will soon be able to hold something between it and the part of his thumb that remains. We indicated to the physicians assistant that we would like to be put on the schedule as early as possible for the next surgery. They are going to try to block out some operating room time and Clay will go back on November 2nd to find out what the plan is. After our visit at Children's we went to burn clinic at our old home Parkland. We were able to visit with Dr. Purdue and let him know what our plans were. He was very helpful and is willing to act as a consultant on the upcoming procedure. We value his many years of burn experience. After our burn clinic visit we raced back South to convention and were able to catch the last speaker of the afternoon meeting. I was able to stay until after the last meeting and then drove back into Olney for work the next day. DeeDee and the boys had a good day Friday and I drove down early Saturday to rejoin them. We enjoyed the opportunity to see everyone that was so helpful during Clay's hospital stay. Saturday was very memorable in that Carson made his choice that evening. We are very happy and excited for him and are looking forward to meeting tonight for his first testimony. Busy days for all. We appreciate all the thoughts and continued prayers of everyone. There were so many at convention and elsewhere that we have never met that have been praying for Clay. We are humbled by the experience and will be eternally grateful.

Saturday, October 10, 2009

Photography Fund Raiser

Hello everyone this is Jenae....

I got a message from my friend, Shanda Miller, who is doing another photography fundraiser for Clay.

Here is the letter and information that she sent me:


Annie Drake and I have rescheduled our photography fundraiser for the Fite Family for November 7th. Could you please post it on Clay’s blog again like you did last time?

Thank you so much! We just really want to help them!

Just wanted to let everyone know about a photography fundraiser for the Fite Family. Annie Drake and Shanda Smith will be having sessions on Saturday, Nov 7th in Grapevine, TX. Please visit for more information.

Thanks, Shanda

Thursday, October 8, 2009

Thursday, October 8, 2009

Hello to all! We mentioned a few months ago that we would post more frequently, but that has not happened. We want to thank you for your continued thoughts and prayers. Clay's eyes, hand, and donor site seem to be healing well from the surgery he had on Sept. 18. If you place your hands under your eyes and pull down hard, you will have an idea of what Clay was experiencing before his surgery. The skin grafts placed under his eyes are full-thickness skin grafts (contains all the layers of the skin including blood vessels); therefore, theses grafts are less likely to contract.
Clay has skin grafts on about 65% of his body (chest, back, head, face, hands, and a portion of his left leg). These grafts are split-thickness grafts (top layer/layers of skin only) and these types of grafts really contract because they do not have the elasticity that full-thickness ones would have. Therefore, this makes his skin resistant to stretching and prevents his normal movement. The scar formation has pulled his chin down to his chest & his bottom lip is almost totally inverted. Clay's next surgery will be a neck release. They will cut into those scars to release them and this will give Clay the ability to lift his head. I am not a doctor, but I have explained some of what we have learned with Clay.
We went back to the doctor about 2 wks. ago (Sept.28) and they cut his cast off to look at the pins in two of his fingers. The doctor wanted to keep the pins in for 3-4 more weeks; so, Clay got to pick the color for his new cast. He picked a "fluorescent" yellow-he can't hide with this one. :-) After two weeks of wear, his cast is now a dull looking color (it's hard to keep little boys' casts clean).
Chance gave us quite a scare on Sept. 24. We were getting the boys ready for school and Chance told me he thought he was having the symptoms of a heart attack. We called his cousin who is a doctor in Seymour (30 miles away) & he told me what to do and that he would be waiting for us at the emergency room. Some of our neighbors came down to get Carson & Cody to school and to watch Clay. Of course, by this time, the boys and I were all in tears and I was trying to reassure the boys that everything would be okay. Chance's cousin (Dr. Martin) had all the tests run on him and everything looked fine. Could have been angina, pleurisy, indigestion...... Could it have been caused by the stress of the past months? He will go back for a stress test soon. We are just so thankful he is feeling better. We also celebrated Chance's 40th birthday on Sept. 27th. We had a potluck birthday party at lunch and then a surprise party that evening. He was surprised! Now he's "over the hill" and feeling fine!
Carson showed a steer at the Texas State Fair last Thursday (Cody will be old enough to show animals next year). It was our first trip to Dallas, in a long time, with no doctor appointments or hospital stays. After the steer show, we had an appointment at the Ronald McDonald House of Dallas. They wanted to interview our family for their Fall newsletter. It was special to see the wonderful staff and volunteers again.
We continue to drive to Clay's therapy appointments 2 days a week and have therapists at our house 2 days a week. Clay is enjoying his schoolwork and "homebound" teacher. He is enrolled in a Kindergarten teacher's class at school and this teacher sends all of Clay's lessons with the "homebound" teacher. The homebound teacher takes his work back to his Kindergarten teacher to grade and then returns it to Clay. He really likes to look at his graded papers~it makes him feel like he is part of the class. He looks forward to his brothers coming home from school each day because he's always ready to play.
Thank you, thank you, thank you again! We will never be able to say this enough for all your care, prayers, support, and kindness. ~Chance, Deidra (DD), Carson, Cody, & Clay Fite

Tuesday, September 22, 2009

Tuesday, September 22nd

Brief note on Clay's surgeries last Friday. Clay spent about 5 hours in the operating room at Children's medical center last Friday, as many of you know. While sedated an Ear, Nose and Throat doctor scoped above and below his trach to make sure everything was in order with his airway. The plastics team spent about 4 hours working on his left hand and releasing under his eyes. We had planned on an overnight stay in the hospital but after the procedure the Doctor told us it might be best if Clay stayed in the hospital for 5 days until the stitches were removed from his eyes and his donor site. Deidra and I were not very excited at this prospect but we thought we would see how Friday night went. After our stay on Friday night we called the doctor and asked to be released. He agreed and we arrived back in Olney around 5:00 p.m. on Saturday. Clay seems to be doing well and is recovering. He is being treated like a little king. We carry him from room to room at his request and Grandma and Mom are at his beck and call. His eyes are not sutured completely shut and he can see over the tops of bandages sewn beneath his eyes, so it is bearable for him. He has kept a good spirit throughout and will return back to Dallas Wednesday of this week to have some stitches removed and visit a trach nurse at Children's. Thanks for all of the thoughts, prayers and concerns. We will keep you posted as progress is made.

Thursday, September 17, 2009

Thursday, September 17th

Good day to everyone. I wanted to drop a quick update on Clay's week. His occupational therapist came to the house Monday morning and did some hand exercises. As soon as he was finished he and his mother packed up and headed to Galveston for a consultation with the plastic surgeon there on Tuesday morning. They were able to meet up with Grandma, "Joy" somewhere south of Olney and she went with them to help out. Tuesday after their visit with the surgeon they went to the beach for a few minutes. It was cloudy and overcast so Clay could run wild for a moment and not worry about the heat or the sun. They took him to lunch at the Rain Forest Cafe, he enjoyed that, they then started home. They picked up grandma's car and made it back to Olney sometime before midnight. Wednesday Clay had physical therapy and school. His therapist worked him hard then his teacher graded some of his papers. We went to meeting in Seymour last night and Clay and Deidra are on their way to Dallas now for a pre-op appointment at Children's at 1:00. What I am trying to say is Clay may need the surgery, that is scheduled for 7:00 a.m. tomorrow, to rest. He and we are staying busy. We appreciated all of the comments on the last post. Please remember Clay tomorrow. They are planning to work on his left hand and place full thickness skin grafts under both eyes. We anticipate the procedure lasting about 4 hours. He will stay in the hospital for observation Friday night. Carson and Cody are at home under the capable care of Grandma. Thanks to all and take care.

Tuesday, September 8, 2009

Wednesday, September 9

Hello to all! Life has kept us busy around here. I wanted to post this before tomorrow. A team from the Parkland Burn Unit will be at Olney Elementary School tomorrow (Thurs., Sept. 10 at 1:00pm). They will present a program to help everyone understand about Clay's burns. This will be the first time he has been around all the students and I'm a little worried about it. Parents and others in town are welcome to attend. I feel like shielding Clay from any unfriendly stares or comments; I pray that it goes well. I am thankful for the support of the school and community. Our hearts hurt so much for Clay and also for Carson & Cody. We cry often and sometimes I feel like crawling into a hole to cry; but, we just pray for more strength and keep going forward because we have so much to be thankful for. We want to say thank you to all of the parents who have taught their own children, by example, how to love Clay. Some children keep their distance from Clay & others play with him as if nothing ever happened. We do understand that it is difficult for young kids to understand. We have noticed that the kids who adjust the best (to Clay) are the ones who have watched their parents interact with Clay. We are thankful for the ones who smile, hug, talk, or pat Clay when they see him. We are experiencing what it feels like to have everyone stare when we go places. We are thankful for our family, friends, and community who make us feel comfortable and loved.
The boys have a new puppy. He is a Jack Russell Terrier and a little ball of energy. He chews on anything he can find; so, I'll be glad when he's past this stage. Some friends here in town invited the boys over for a "puppy picking" party. Clay picked the dog and named him; he named him "Chocolate" because he said that the puppy's face looked like chocolate. Our old dog is not very happy about having this new puppy around, but the boys are enjoying him.
Clay will have his first "outpatient" surgery next Friday (Sept. 18). They will perform surgery on his left hand and release his eyes. Clay and I will travel to Galveston next week to meet with a plastic surgeon at the Shriner's Burn Hospital. Thank you to Phil for helping us get in touch with the doctors at Shriners. The hospital in Galveston sustained damage during a hurricane and now they are opening it again. The soonest that these doctors could do any type of release on Clay would be November. We will inform you about decisions made & will know more after we consult with the plastic surgeon. The doctors (at Parkland)are planning on releasing Clay's neck during the first part of October. I'm sure I have confused you by now, but we are just praying that we make the right decisions.
Thank you to all for your continued prayers and care. Hugs from the Fite family!

Friday, August 21, 2009

Friday, August 21st

Hello to all. There have been many things going on in our life. Summer is winding down and school starts back Monday. We made a trip to South Texas last weekend so Clay could go to the ocean and see Grandma and Pappy. He had a good time and was able to walk on the beach late in the day and fish off the pier at night. There were several people that came to see Clay while we were there. He has gained much of his strength back and decided that it was time to ride a bike again. He has not been on one since the accident. Grandma was filming the first ride, which turned into a race, and she witnessed a spectacular crash. Clay was racing his brothers when he lost control and fell over. He now has scraps on his knee. He was lucky in his landing and does not seem to be suffering any ill effects. We had another surprise while in Corpus. We had contacted the Shriners burn hospital for a consultation and they called the Friday we were there and said they could see Clay on Monday in Houston. We made plans to spend an extra night and drove up the coast on Monday morning to a 1:00 appointment in downtown Houston. The people at the hospital were very gracious and they explained a lot of different thoughts about Clay. The most interesting portion of our visit was what we were told about his left hand. They took X-rays while we were there and thought they could take the remaining portion of the index finger and stack it on the top of the thumb to give it more length and function. They have a plastics specialist that was on vacation. As soon as he returns they are going to explain the case to him and contact use if this is feasible. Clay is already on the surgery schedule for September 18th at Children's in Dallas. They were going to work on the hand and release the eyes. We hope to have discussions this week with the doctor from Children's. Clay went to burn clinic at Parkland yesterday. They want to schedule a neck release early in October. Mom takes him to Wichita Falls every day for therapy. Deidra will homeschool Clay this year. We have also enrolled him in kindergarten but he will participate as a homebound student. Through this program, a teacher will come to the house 4 hours a week and OT/PT will come as well. The teacher that is sent out has to be certified in Special Education. Deidra has her teaching certification (1st grade-7th grade) but is not certified in Special Ed. One of the education diagnosticians mentioned that if Deidra was certified in Special Ed., she could be contracted and paid to teach Clay. Deidra is trying to figure out how she is going to get all of Clay's lessons taught, take him to his daily appts., and be back home to meet Carson and Cody when they get off the bus (along with washing clothes, cooking meals, helping with homework, grocery shopping, etc.) As a family, we will all come together and help (many hands make light work). Deidra mentioned that she would like to have more time to send e-mails and stay in touch. Instead of turning on the computer at night, we try to get as many hours of sleep as we can. Please know that we are grateful for all your comments and care. Hopefully, one of these days, we will have time to respond to you individually. Many thanks to all who have continued to pray. We pray each day for strength from God. We will try to post more frequently after school begins and we get into a routine. Take Care.

Saturday, August 8, 2009

Saturday, August 8

Hello to all! We have not posted in awhile, as we have been busy travelling to Clay's rehab & doctor appointments. Each weekday morning Clay gets into a hyperbaric chamber for 90 minutes. He has been in it 8 times now and will continue for awhile. After his hyperbaric treatments, we travel to the rehab center in Wichita Falls (Mon, Tues, Wed, & Fri). We have been travelling to Dallas on Thursdays (to the Burn clinic); and the Occupational therapist puts a new cast on Clay's right hand each week. We have become attached to all of Clay's therapists in Dallas and Wichita Falls. To each therapist who worked with Clay in the hospital and all the ones who worked with Clay in the outpatient clinic: we miss you. To all of Clay's therapists in Wichita Falls: you already have a special place in our hearts. To all the nurses and doctors who worked with Clay: you will always have a special place in our hearts.
We met with a plastic surgeon last Monday at Children's hospital in Dallas and he discussed the surgeries he could do for Clay. He can help Clay have 50% function with his left hand by performing surgery on his middle finger & the small portion of thumb, to create a pincher. He also discussed how he could surgically release Clay's neck and eyes. We will post specific surgery dates and details later. We also contacted the Shriner's hospital in Houston. We will know next week when we can schedule a consultation with the doctors there.
Clay is still eating very well and keeping up with Carson and Cody. His brothers have been good therapy for him. As a family, we were usually outside a lot & did many outdoor activities. We are now adjusting to a "new normal" way of life - indoors a majority of the time. I had some time the other day to work in my flower beds and enjoyed the sun. Clay can go out in the late evening to play for awhile. As the weather cools down, he will be able to go outside more often (with sun protection). With the 100+ temperatures, we have to be careful that he does not get overheated when we go to his appointments and run errands. We have to spend a little time outdoors each day or else we would go crazy (& Clay needs his vitamin D). We had our first "big" dinner together last evening & the boys helped prepare it. Before the accident, I would have fussed about any mess in my kitchen. Now, I am just glad that we are all together making messes in the kitchen. :-) The time we spend with our children is priceless.
We want you all to know how thankful we are for your care; & please feel free to call, write, or visit anytime. Have a good day!

Tuesday, July 28, 2009

Tuesday, July 28th

Hello to everyone. Thought I might drop a brief line to update. Clay is doing therapy daily at the North Texas Rehab Hospital. We all took a few days off and traveled to Happy Convention this past weekend. Clay was quite the celebrity. The gracious friends around the convention built a cool room for Clay to sit in so we were able to attend every meeting. Thank you. Clay played and had time to ride the swing sets late in the day when it cooled off. We were happy to see many of our friends and made and met some new ones. Monday of this week was back to routine therapy. We have a company in town that manufactures Hyperbaric chambers. The owners offered to let Clay use their equipment for oxygen treatment. We went down Monday afternoon and toured their facility and all three of the boys were allowed to get in one of the treatment units. Clay has his first treatment this morning and was excited about it. Thursday of this week it is back to Dallas. We have burn clinic and all of the burn doctors will determine when and where to schedule the next surgery for releases. Clay has an appointment Monday with the plastic surgeons at Children's Hospital in Dallas. They will be looking at hands, head, ears , neck and head. He seems to be getting stronger each day and continues to eat well. He is willing to try about anything and has a good spirit most of the time. We hope everyone is having a good summer and are thankful for all of the support Clay is still receiving. Take Care. The Fites

Wednesday, July 15, 2009

Wednesday, July 15th

Good Morning. Sorry about the long delay between post. There are a lot of activities around here, most of them revolving around Clay. We went to burn clinic last Thursday in Dallas at Parkland. Doctor Arnoldo said that Clay is healing but he expects to schedule the first surgery with in the next 3 to 4 weeks. We will go back for another burn clinic visit on July the 30th. Clay had a surprise last Thursday in therapy. The nice folks in the Physical Therapy unit had baked him some cupcakes and he had a surprise early birthday. It was thoughtful of them and he shared his cupcakes with everyone. The rehab doctor wrote us orders for an evaluation at the North Texas Rehabilitation Hospital in Wichita Falls. We went Monday and they accepted Clay and he has therapy there every day this week. It is wonderful having everyone home. Deidra and the boys take him up for his appointments and there are always errands to run in Wichita. We try to help with additional exercises and stretching at home. Clay turned 6 years old Sunday. He wants to thank everyone for the cards and gifts. I am afraid he is going to be spoiled rotten. We had a little party that grew into a large gathering. We had all of his friends from meeting, plus several of his friends from town, and several family members and cousins. He had a good time and needed no help opening gifts or eating birthday cake. Our schedule is pretty hectic but we welcome visitors anytime. Our annual church convention is next week in Happy, TX and thanks to Clay's progress and the help of the friends we are excited about attending. There have been people that indicated they gave blood for Clay in different parts of the country. We are sure we have not been able to properly thank everyone everywhere but we are grateful to all and want to let you know your gifts, thoughts, and prayers are appreciated. Deidra had an opportunity to visit with Kermit's grandmother yesterday. Apparently he has had a tough time since his release from the burn unit in Dallas. He had to go back into the hospital in Austin for some open wounds and has already had a couple of surgical procedures. He was going back in today for some work on one of his shoulders. We know many of you prayed for Kermit and it appears he needs them now as much as ever. Clay has a remarkable spirit and has been teaching his Mom and Dad how to act in some difficult situations. He is a resilient little boy who is really missing his usual outside activities. He tells people that this summer he has a hospital tan. We will try to update more frequently. Thanks to everyone I hope it's raining and cool wherever you are.

Monday, July 6, 2009

Monday, July 6th

Hello to all. I hope everyone had an enjoyable 4th. We enjoyed the extra day at home with the boys. Clay had a good holiday. He tried to eat as much as possible and nothing was off limits for him. Hot dogs, hamburgers, chips, nachos, cookies, corn, eggs, pancakes, fruit, the list could go on for days. Clay arrived home Thursday and was able to attend Carson's last baseball game of the season. He was allowed to sit in the dug out and sampled one of everything from the concession stand. He was happy to take part and he and Cody had a good time at the ballpark. We went to a cookout Friday and he fared very well there. He is the center of attention and seems to like all of it. There were some fireworks after dinner and he was allowed to sit in a recliner to better look up and enjoy the show. We had some family drive down from Amarillo Saturday and Clay visited with everyone. Sunday we had meeting and a big potluck which Clay thought was perfect. This morning Deidra, Carson , Cody , and Clay left before 6:00 to arrive at Parkland before 9:00 for his first appointment with Occupational Therapy. I know he will work hard. We are amazed at his can do attitude and are starting to realize there is still a little boy with Clay's spirit that has been kept under wraps for 4 months. He told his mother he thought he might be a fireman when he grew up but he sure didn't want to be burned again. He is scheduled back into burn clinic Thursday. All of the doctors will have a look and we will decide what the next step is. This Sunday Clay will have his 6th birthday. What a difference a year can make. Thanks to all.

Monday, June 29, 2009

Monday, June 29th

Good Morning to all. Clay had a busy weekend at home in Olney. He arrived Friday afternoon and was happy to be home. He had several things he wanted to show off. He had a new purple cast on his right hand, he has quickly learned that it is a club and he used it in our wrestling matches. We stayed around the house most of the day Saturday trying to avoid the heat. My grandfather had his 86th birthday Saturday night and we went to Seymour for the celebration. They had BBQ and Clay ate about 10 pounds. We did not stay long, but when we returned home and Clay was getting ready for bed he needed a little more sausage before he could say goodnight. He enjoyed his brothers and cannot understand why he cannot go outside whenever the urge strikes him. Sunday we went to meeting and had a pot luck lunch after. There are several younger girls there and they waited on Clay hand and foot. He was the king and they were a group of mother hens. He enjoyed playing with all of his meeting friends and it was good to be back with them after a long absence. He and Mom will head back to Dallas around noon today. Clay has a 3:00 OT appointment. Cody and Lizzie Smith are going to help Clay and Deidra while Carson and I stay in Olney. Carson will head to Electra tonight for his first tournament game. Clay has good moments and bad just like everyone but, he is getting stronger by the day. We will continue with therapies at Parkland for a couple more weeks and then we plan to move to the North Texas Rehab and continue the work closer to home. Hope everyone is having a good summer we appreciate every one's concerns and continued prayers.

Wednesday, June 24, 2009

Wednesday, June 24th

Good Morning. I have had several request for an update. Clay and Deidra are back in Dallas all week for outpatient therapy. DeeDee's aunt Lorna Powell is staying with them. It is a big help to have someone to drop them off and help watch Clay because we are not comfortable with him out of our sight. He is doing a combination of physical and occupational therapy. It is all hard work but I hope he realizes it is for his benefit in the long run. They are doing a series of cast on his right hand. The grafts on this hand are contracting and this is pulling the fingers up. The cast are working the skin down so he can eventually make a fist with his right hand. With the right hand in a cast and not much use of his left he is hard pressed to do much without help. One thing he has been doing a lot of lately is eating. Apparently he is trying to make up for four months worth of missed meals. He eats about every thirty minutes and seems like he needs snacks in between. We are happy to see this appetite and try to accommodate all request. We have contacted the North Texas Rehab Hospital in Wichita Falls. We would like to get a portion of his therapy done in Wichita because he could stay at home and make the short trip back and forth easily. We will still go into Parkland for burn clinic and consultations on his therapy. Cody is in South Texas at his grandparents and is scheduled to return at the end of the week. Carson spent the first two days of the week with Clay in Dallas but is back in Olney to prepare for the Little League All Star Tournament. Having Clay at home all weekend spoiled us all. He and Mom were not ready to go back to Dallas and I was not ready for them to leave. Hope everyone is having an enjoyable summer. Take Care.

Friday, June 19, 2009

Friday, June 19th Home

Clay made a triumphant return home today thanks to the many kind hearts in our hometown. He was met out side of town by three fire trucks and two ambulances. With lights flashing in front and behind he was trying to grin from ear to ear. As he sat in my lap, he was wiggling with excitement when the lead truck started their sirens and blew their horn to signal our approach. There seemed to be half the town lining main street as we pulled in. There were signs, balloons and many smiles. Clay's right hand is in a cast, and seems to be out of commission for a while, but he tried to give everyone a wave with what is left of his left. I was a little concerned in the passenger seat because Deidra was driving and I know her vision was blurred by all of the tears. We are so grateful to our community for all they have done. We have all heard that there is no place like home and the Fites agree. Thank you to the firemen and EM Ts that took the time to see a little boy home. Thank you to everyone that came out to wave encouragement for the future. Thank you to everyone at Hamilton Hospital that helped Clay when he was first brought in. Thank you Channel 3 for keeping everyone updated. The list could go on for days, and I am sure to have left someone out. Thank you to our friends, neighbors, and coworkers who have been so gracious. Thank you to Tower Extrusions for standing with us through this trying time. Thanks to Olney. Thank you to all the friends and workers across the country and around the world. Most of all thanks to God for seeing Clay safely back home where we can love and heal and help him grow into a young man. We will be posting a couple of times each week now and whenever something noteworthy happens. We appreciate everyone who was faithful in prayers and comments on the blog. Good night from Olney, Texas

Thursday, June 18, 2009

Thursday, June 18th

Hello to all. Clay had an early morning PT appointment. He worked with the balance board and stretched. He was then allowed to do some type of therapy with the Wii. He went back for his occupational therapy and they worked him pretty hard. The remainder of the day was spent hanging around the Ronald McDonald House. This afternoon when they were cooking dinner he was in the playroom down the hall from the kitchen. When the smell of the dinner cooking made its way down to the play room, Clay said he was starving and took off out of the play room toward the kitchen. He got to the door and started down the hall and turned to his Mom and said, "Let's go, I am following my nose." Tomorrow marks 126 days since he left Olney on the helicopter. We are anxiously awaiting his return tomorrow afternoon around 5:00. What a wonderful day. I am sure he is excited by the prospect but he cannot be any more happy than the rest of his family. We are so thankful that God brought him back into our home. It was touch and go at times, but as scared as we were we always looked toward his return. He is going to face many trials and we can already see some frustration but his spirit and his family will help him get back in the swing of things. We have toyed with the idea of posting a recent photo of Clay on the site. We have sent a few to his friends to help them prepare. Please let us know what you think of this idea. We ask you to realize that Clay is a work in progress. We are eternally grateful to everyone that has helped during this time. We will post tomorrow after his return and then we plan to reduce the number of post to 2 or 3 times a week depending on noteworthy news. Once again thank you and good night.

Wednesday, June 17, 2009

Wednesday, June 17

Hello to all! Clay had a busy day for a five yr. old. He gets tired very quickly. I know it will take some time to gain his strength back. My sister drops us off at the front of his therapy clinic, and he is exhausted just from walking from the car to the waiting room. He kicked a ball, played catch, balanced on an exercise ball, had his leg stretched, and had paraffin put behind his left knee during his physical therapy session at 11:00am. He then was hungry for lunch, ate a few bites, and wanted to rest. His OT (occupational therapy) appointment was at 2:00pm and he was tired before the hour was up. The therapists put a new cast on his right hand and it will be cut off on Friday. On Friday, a new cast will be made and left on until next Monday. The scars on his right hand are causing the fingers to hyperextend. This is why casting it is so important. He was hungry for fettuccine alfredo and so we found an Olive Garden. Uncle Justin met us there, so we had a nice visit. Clay got tired in the middle of his meal and wanted to lie down. He went to sleep early; but, not before he ate some of his left-over fettuccine. We have an early OT appointment, so I am going to head to bed, also. He slept really well last night and I hope he has a restful night tonight. Thanks for keeping up with us and for all your care.

Tuesday, June 16, 2009

Tuesday, June 16th

Clay had a busy first day of freedom. He had two separate therapy sessions and a picnic lunch in between. During his first appointment with occupational therapy they did very little except measure the different range of motions he had in his arms, hands, neck, face, etc. He had quite an audience for his first trip back to the hospital. His mother parked in the covered parking and they walked across the sky walk to the hospital. Mom told Clay that this is where we had been parking for 4 months. It was a long walk for Clay and he wore down quickly. He slept pretty good last night but he is still a little restless and it is hard for him to get comfortable. After his first appointment his cousins, brother, aunt, and grandma were all waiting for him and they went back to the Ronald McDonald house and met some of our ministers for a picnic lunch in the shade. Once again Clay enjoyed the Cheetos. The appointment after lunch was supposed to be with physical therapy but they had him set up for wound care instead. This was unnecessary but they scrubbed Clay's head until he started to cry to earn their money. He has very little wound care and it is something that we can easily take care of so they said we did not need anymore appointments with them. He came back to the RMDH and played a bit but then he realized how tired he was and when I visited with Deidra at 7:30 he was sleeping soundly. We are so very thankful that Clay is out and we continue to pray for his healing. We are happy and nervous at the same time but we are looking and hoping for continued good days for Clay. Thanks to all and good night.

Monday, June 15, 2009

Monday, June 15, 2009

Today was an exciting day at Parkland Memorial Hospital. Clay was discharged!! Something we have all been waiting for for a long, long time....121 days, to be exact :) He had a feeding tube in this morning and while we were feeding him blueberries he complained that he was choking on something. The feeding tube had come out and was wrapped around his tongue. It only took a second to have that thing out! We are glad to say that it is out for far. He had to wait his turn for the bath and that seemed to take forever. He was finally able to go bathe around 12:30 or so. He was SO excited. He scrubbed himself good, dad washed his hair and got his trach cleaned and put back in. After the soap was washed off he was covered in warm towels. He put on a button-down shirt, shorts, socks and shoes. It's the first time he's worn shoes since he's been in the hospital. He was even able to zip his own pants. Quite the determined little boy :) He walked out of that room where they take a bath and headed down the hall to the exit. We had to stop him and tell him he couldn't leave until we had signed papers and got the approval for discharge. He was pretty disappointed at that. It took another 4 hrs until we could finally leave the hospital. Just for the record, quite a few patients were discharged today so it was very busy in the BACU. Before we left, Clay, mom and dad walked over to the BICU and told the nurses and others thanks for the great care and goodbye. While waiting for the final papers to be drawn up, grandma, Aunt Jenae, and the rest of the kiddos hauled the "furniture" from the room (that had been collecting for 4 months) down to the cars. That was a job in itself:) He was finally released around 4:30 p.m. and everyone was cheering as he was wheeled out in the required wheelchair "chariot". When he got to the front of the hospital he said, "Hey, look, there's a bird!" He took a deep breath of the outside air for the first time in a long time and said, "Aaahh". He was loaded in the car and we headed to the Ronald McDonald House. He has been looking forward to coming here because of what his brothers have been telling him. They have been wanting to show him around and were trying to show him all the rooms and exciting things all at once. He got to play air hockey in the game room and after a couple games (he won both) he went to lie down because he was exhausted! He has eaten very well since coming here and we hope it all stays down and he continues to get better. Chance and Carson headed back to Olney tonight. When Chance told Clay goodbye Clay asked where he was going. Chance told him, "I have to go back to work, buddy." Clay said, "Where do you work?" This made dad laugh! He will go in for outpatient therapy everyday this week and will get to go home for the weekend. Thanks and hugs to hugs to everyone in the BICU and BACU! We appreciate you. Thanks to all for standing by us during this time - we are thankful for you all!

Sunday, June 14, 2009

Sunday, June 14th

Hello to all. We hope everyone had a good day. Clay did. He made several trips to the playroom and he ate a portion of every meal. We are so glad to see him start to regain an appetite. I think the highlight of his day was the fact that he felt well enough to eat Cheetos. He does not usually get them at home and he relished the first small bag and then told us he could eat another. He waited until he returned to his room and found another small bag and enjoyed every crumb in that one as well. He was orange from head to toe. He helped a great deal during his bath. After he was cleaned up we went back to the playroom. Kevin and Lizzie Smith were there and when I put Clay down he walked to Kevin and gave him a big hug. He enjoys the X-box in the playroom but guest give him a chance to break out the board games and play a bit. We are scheduled for discharge tomorrow. He is going to be headed to the Ronald McDonald house with the trach and the feeding tube in place. I think both of these items are insurance. If he continues to eat the feed tube can be removed pretty quickly. Jenae is en route tonight from Argentina. She and the kids will arrive here at 6:00 in the morning. She is going to stay and help Clay and DeeDee this week while Grandma gathers up a large group of grandchildren for a return to South Texas. Clay felt much more like himself and we appreciate all of the prayers on his behalf. Thanks to all and we will keep you posted as we make our way out of Parkland and closer to home.

Saturday, June 13, 2009

Saturday, June 13th

Good evening to all. This is Chance in Dallas. Clay is hooked up, feed tube, IV, humidified room air. All of the above does not make for a very restful nights sleep. Hard to go back to all of this stuff when we felt we had left it behind. They are taking blood twice a day to make sure his numbers are coming back up. They are still giving some potassium. He had a pretty good day today. He went to the playroom a couple of times, once on his bike and twice on foot. I had the opportunity to pull the trach today. I was amazed at the size of the hole in his throat. It is tiny. If things continue as they are we are looking at discharge Monday and outpatient therapy the rest of the week. We are excited about the prospect and hope he continues to improve. We had several visitors today and this past week and all were appreciated. Clay seems to have wrapped several of the therapist and nurses around his finger and they all stop in to visit from time to time. Tomorrow marks the 4 month anniversary of the accident and Clay has come along way. We are thankful for the doctors, nurses, friends, and family that have helped Clay make it back to here.

Friday, June 12, 2009

Friday, June 12

Hello to all. Clay had a long day. His day began with his trip to Children's hospital. We (Childlife Specialist, a nurse, and myself) rolled Clay over to have his GI test done. I was standing at Clay's head and watching the camera screen. The radiologist was great in explaining exactly what we were looking at and looking for. He said that it was acid reflux and that there were no obstructions anywhere (of course this would all be sent to the doctors in the burn unit to have them decide). The barium was pushed through his feed tube, and it was vomited up the second it touched the stomach. Clay was very upset and was saying over & over "Please don't put anymore of that in my tube." It took 5 of us to calm him down so that the radiologist could follow the barium and take pictures. He also placed Clay's feed tube, past his stomach, into his intestine. This team, at Children's hospital, perform this test on a daily basis; so, they were quick, knowledgeable, and efficient.
Clay was taken to get his bath when we returned to his room. His blood labs showed that he was low on potassium. The night nurse worked all night to get his potassium levels where they needed to be. Hopefully this will help with the vomiting too. His tube feeds were started this afternoon and something was given for his acid reflux this evening. We hope this resolves our vomiting issue. He was restless all evening and I hope he can get some much needed sleep tonight. Hope you all get a good night's sleep as well ~ thanks to all!

Thursday, June 11, 2009

Thursday, June 11

Hello to all! What a stormy night and morning we had here in Dallas. Hope all of you in this area made it through the storms okay. Clay finally had a bowel movement this morning, but he's still vomiting. We had asked about Miralax, but he cannot keep anything down so this was not given. Some have asked if it there could be damage to his vagus nerve and the attending doctor said that there is no damage to this nerve. As a matter of fact, there is (and was) NO internal damage caused from the fire. His potassium numbers were low, so they are giving this through his IV. They are also giving him Reglan and Amitriptyline.
A team from Children's Hospital will come get Clay at 9:15 in the morning. They are going to do a G.I. test. I will follow them over and will be able to be in the room with him. I changed Clay's trach tube ties today after his bath. With a doctor by my side, we take his trach tube out for a few minutes each day. He gets so anxious and stressed when he realizes that his trach tube is out. He cries and motions for us to put it back in and then vomits. We have done this for the past three days, so that I get used to changing it when we are at home. Also, the doctor wants to show Clay that he CAN breathe without it. He can breathe through his mouth and nose if he will stay calm. The attending doctor visited with me about this issue yesterday. Clay has become so accustomed to his trach tube (4 months) and he thinks that he cannot breathe without it. I have come to see and understand that his anxiety is not caused by having the trach tube in. He becomes anxious when his trach tube is taken out or when it is plugged with secretions.
Clay walked with his Physical therapist today and spent about 15 min. in the playroom. He had to have two feed tubes put in this afternoon. The nurse pushed the first one through his nostril and then had to pull it out after the x-ray revealed that it was curled in his stomach. A second one was then put in. Clay has gagged and vomited more frequently since. Also, he began to cough more secretions through his trach tube. He has not had many secretions, so we do not know why this has caused more. I feel for him and wish I could take it away.
We will see what the test shows in the morning. Thanks again for all your help and encouragement.

A verse of one of our hymns has been on my mind the past few days: "He leads us and by faith we follow with hearts united to His will; His heart will plan His hand deliver and show to us He's leading still..."

Wednesday, June 10, 2009

Wednesday, June 10th

Hello to all. Short and late post tonight, sorry. Clay had another day of vomiting, as has become the norm. We are receiving a lot of advice and all is appreciated. Know one knows the exact cause of the problem but we will continue to try different treatments. Clay had to have his IV replaced because his was plugged and no longer viable. The nurses missed his vein several times and he was in a great deal of pain. This afternoon the childlife specialist brought a doll of some sort in and gave Clay a needle. She told him it was his turn to give an IV. Mom said he took great pleasure in sticking the doll. I asked him if the doll was crying and he said yes. I am sure that he was happy that someone beside him was getting stuck with a needle. Misery loves company. He was nauseated most of the day and never kept any food down. If we decide to stay where we are they will put the feeding tube back in tomorrow and probably do a die test on him to see if there is anything unusual in his stomach. Mom, Grandma, and Cody had a meeting with Clay tonight. They said he tried to participate. He feels so bad it is hard for him to do much of anything. One hymn that was chosen was # 383 Deidra really enjoyed the portion which says' "He knows our trials and temptations, And bids us seek His face alone For grace to overcome and live a life more worthy of his Well done." Hope all have or had a restful night. Thanks for your thoughts , prayers and concerns.

Tuesday, June 9, 2009

Tuesday, June 9th

Hello to all. This is Chance posting from Olney. I bet it's hard to know where we are. We are not sure ourselves sometimes. Grandma, Cody, and Mom are in Dallas tonight. Joy spent the night with Clay and said it was not very restful. He continued to vomit through the night. The resident doctor was making his rounds this morning and he told Joy they were not overly concerned about the vomiting. I bet he would be concerned if it was him who had been sick since last Saturday morning. Deidra met with the social worker and told her we were not comfortable with what we had been shown with the trach. They allowed her to go into the tank and two of the doctors came in and showed her how to pull it out. Clay panicked with out it and would not breath through his mouth or nose. They replaced the trach and he promptly vomited. All and all quite a learning experience for everyone involved. Dee Dee thinks that the anxiety he has about his trach is causing the vomiting. I think the cause has yet to be determined. They tried to entice him to eat all day so he would not have to have the feed tube placed back in. They were not successful. He has still not had a bowel movement and several people suggested we try a product called Miralax. Grandma is going to see if this would be available tonight. We are having a tough time these last few days and we are hopeful that something will resolve the problems for Clay. Good night to all.

Monday, June 8, 2009

Monday, June 8, 2009

It's Jenae again. DeeDee is in Olney with Carson and Chance is at the hospital with Clay. Grandma is driving back to Dallas from Ingleside with Cody. She is going to relieve Chance. Clay was not discharged from the hospital today as we first thought. He has thrown up so much that an IV has been put in him. They put it in last night. Today the vomiting was not as often, but he still threw up until noon. Clay wanted to take a bath today so they took him to do that, but he was in lots of pain and didn't want to do much after that. He had an X-ray taken yesterday and it shows there is some distension in his intestinal/bowel area. They are trying several things to get the vomiting to stop and we will hope to know more by tomorrow. Thanks for riding this emotional rollercoaster with us. We appreciate all the thoughts and prayers.

Sunday, June 7, 2009

Sunday, June 7th

Hello. This is Chance. Clay had a decent night, the vomiting medication made him sleep. He slept until about 5:30 this morning before he awoke and started where he left off last night. He has not eaten anything since dinner on Friday night. We are trying to keep fluids and some of the kid essential protein down him. He had several episodes before lunch. He was exhausted and slept from 9:30 until 11:00. They came in and did an x-ray to see if anything looked unusual. He went to the tank at noon and set in the playroom for a bit afterwards but he is still not feeling very well. We are going to keep pushing fluids through the night tonight, and see if rest will help put him back on his feet. There are still plans for the discharge tomorrow but, we will have to see what the night and morning hold before the decision is made. We have been so encouraged by his recent progress that these days are hard. Deidra and I would like for him to have good days for the rest of his life. It seems he has had more burdens than some will ever face. We appreciate the thoughts and prayers of everyone and please remember him tonight. Thanks to all. I hope one of us post a good report tomorrow. Good Night.

Saturday, June 6, 2009

Picture of the boys

This is Jenae again. This is a picture of the Fite boys taken in Dec. 2008. From left to right: Clay, Cody and Carson

Saturday, June 6, 2009

This is Aunt Jenae posting from Argentina..Clay did not have a very good day. DeeDee and Chance had a CPR class all day today. Uncle Justin stayed with Clay for the whole day and Aunt Lorna came to help out for several hours. Chance and DeeDee are thankful for their help. Uncle Justin was able to go to the shower room with Clay and help him get cleaned up. Uncle Justin was just as big of a trooper as Clay was because he was running around gathering towels, wash cloths, etc trying to keep up with the vomiting. It was back and forth to the laundry and making the pile of towels bigger each time! I am sure he thought he was going to have a fun day playing games with Clay and spending most of the day in the playroom :) I know he was glad when Aunt Lorna arrived to help him. The vomiting started around 3 a.m this morning and continued all day. If you remember, his trach had been downsized and it's much smaller than the last one. He was having trouble through the night feeling like his trach was plugged. The night nurse called the Respiratory Therapist from ICU to come suction it out. Thirty minutes after that he started vomiting and has not stopped. He doesn't feel like eating, but they are encouraging him to drink lots of fluids. Just for the record, the fluids come up, too, but he needs to keep trying so he doesn't get dehydrated. He was not able to sleep until just about 7:30 pm this evening after he was given a suppository of Phenegren (sp?). He is completely exhausted and worn out from all of this. He is not running a fever so they don't think it's an infection. DeeDee and Chance are staying with Clay tonight in the room and will watch and see how things progress. If it gets to the point where he needs fluids they will put an IV in him. We hope his little body can get some much needed rest and wait until the morning before any decisions are made. Thanks for all the encouraging posts and thoughts and prayers. Good night and may you all sleep well. Love, the Fites

Friday, June 5, 2009

Friday, June 5

Hello to all. First of all, we want to thank you again for all your prayers and encouraging words. We would have loved to respond to everyone who posted on Clay's blog (over the past months); but, our days were long and our nights were short. To the ones we have never met, we would love to meet you all someday. To the ones we know, we would love to see you sometime. You all have touched our hearts in so many ways and we are grateful. I hope that you all will get the chance to meet our boys someday.
I see more clearly why God needs us to be childlike. Clay's spirit through this experience has been truly amazing. I learn more from him everyday and am thankful for the spirit of a child.
He had a busy day with his therapists, his bath, and his playtime. :-) Chance and I will be taking a CPR class tomorrow. Uncle Justin will stay with him all day. Grandma and Cody made it to Grandma's house safely and Carson is with some friends in Olney. Clay will just hang out at the hospital over the weekend and be discharged sometime on Monday. We will be here each day, next week, for outpatient therapy. I'm headed back to the hospital to be with Chance & Clay. We will continue to post on Clay's progress.

With heartfelt thanks to all ~ Chance, Deidra, Carson, Cody, and Clay

Thursday, June 4, 2009

Thursday, June 4th

Hello to all. This is Chance posting from Olney. Clay had a busy day. He was fitted for his new pressure mask and received a new smaller trach tube. He was given some medication before being fitted for the mask. It hit him as he was riding his tricycle back to his room and he could not make his legs peddle any further. Deidra went to the tank with him for his bath and she was told it was time for her to learn how to give it. She did and I bet Clay enjoyed having Mom as his bath nurse. The doctors placed some numbing medicine on some granulation tissue around his trach. After it took effect, they coated the tissue with silver nitrate to remove the unwanted skin. The child life specialist visited with Clay for a long time today. She let him look in a mirror for the first time. She and Mom had explained the grafts and when Clay had the first look at his face he really started doing the stretching exercises. That is a pretty brave testimony. Clay went up to the 10th floor to see the helicopter landing pad. His Mom told him they would have to sneak him on the elevator so his nurses wouldn't know he had left the sixth floor. He thought this was a grand game and said, "Hurry Mom" and "Close doors close." He was excited by every meal today and embraced whatever was served. Clay's Aunt and cousin are staying with him tonight. Grandma and Cody are headed to South Texas tomorrow and we will spend the weekend anticipating Clay's discharge. We appreciate all of the kindness that has been shown the Fites and hope that Clay can continue to touch hearts everywhere.

Wednesday, June 3, 2009

Wednesday, June 3

Hello to all. It is late and I'll post this quickly. Clay had a busy day playing in the playroom. They did not downsize his trach tube today or cut away the granulation tissue growing over his trach tie. The therapists did not have time to make him a new, left, leg splint. This will all be performed tomorrow. I will also be meeting with the care coordinator, childlife specialist, and social worker in the morning. I was supposed to meet with them today, but it didn't work out. Hopefully we'll get a chance to meet in the morning. They are going to address the fact that people may stare and how to face the public when we leave the hospital. I get too emotional when I think about this & I'll post more tomorrow. Praying always & thanks to all!

Tuesday, June 2, 2009

Tuesday, June 2nd

Hello folks. DeeDee is having trouble making a wireless connection at the Ronald McDonald House so this is Dad stepping in from Olney. Clay had another good day. He seems to be on a roll and we are thankful for it. We expected a respiratory team today to downsize the trach. No luck they never arrived. The childlife specialist was available today and she let Cody spend some time with Clay in his room and in the play room. I'm sure the brothers enjoyed each others company. This afternoon Cody and Clay played some ball in the hall of the BACU. Physical therapy brought Clay a tricycle today and he road it up and down the hall and through an obstacle course that they had set up. After riding the trike she made him play a soccer type game where they kicked the ball back and forth. When Alicia the therapist left, Mom helped Clay back in bed and he said, "Whew, That was some serious therapy." He stayed in bed for a full 5 minutes and told his Mom he thought he would go ride that bike some more. Off he went. Dinner tonight was some hospital meatloaf. Clay told his mother that her meatloaf was number 1 but this was a close number 2 and he ate it up. He told his mother he was ready to use the toilet and he got up and went. He was pretty excited because he has not used one in over 100 days. He understands progress. Deidra feels like we are just biding our time. They want us to get the CPR class out of the way and then they should start seeing use on an outpatient basis. We do not know how many days each week will be dedicated to therapy. We appreciate all of the post and encouraging words. We are thankful for Clay's progress and every ones support. Good night.

Monday, June 1, 2009

Monday, June 1

Hello to all! Wow - June is here! I thought about the words of one of our boy's favorite hymns today: "Time is fleeting, flowers are falling, Life will soon be past; pause and ponder where thou goest: Time is flying fast." Cody and I are at the Ronald McDonald House tonight and Grandma is at the hospital with Clay. We will go to the hospital early in the morning and Cody will come back here with Grandma. Carson is in Olney with Chance because he had some activities this week. Clay had another active day and he is ready to leave the hospital. When I arrived early this morning, he continually asked "Where's my breakfast tray?" "Why is it taking so long?" "Did they forget?" "Mom, where is it?" We were both so excited when it arrived. He loves to lift the lid off his plate to see what he's having for each meal.
Clay will be sent home with his trach tube. We had many mixed emotions about this; but, we are just happy that we get to take him home. We will adjust to life with a trach tube and understand that it is not permanent. Chance and I will be taking a pediatric CPR class. Someone who knows (and works with) pediatric trach tubes will be sent to Clay's room to show us how to change it, clean it, and put it back in (if it comes out). I keep telling myself to not worry, worry, worry. We were told that Clay will have surgeries every month or two. His scars will have to have releases. In order to perform these surgeries, Clay will have to be under anesthesia. The scars have caused his neck to pull down and his mouth doesn't open wide; therefore, it would be extremely difficult to intubate him for surgeries. Having the trach tube leaves an open airway that the anesthesiologist can work with during his surgeries. I'm going to go to bed now that I have probably confused all of you. I'm so tired, I can't think much more. Thanks to all and good night.

Sunday, May 31, 2009

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 30, 2009

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, 2009

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, "" 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, 2009

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 26, 2009

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 25, 2009

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

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.