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.