Friday, August 21, 2009
Thursday, August 20, 2009
I know, I know...
where have you been? Guys, I'm on Facebook and it's so much easier to update and I get instant gratification and feedback...though I know blogging is important too so here goes...
The girls went back to school today. It's official we have a sophomore and a second grader! Today has been an emotional day for me. This morning I realized that if Fletcher lived at home he would've started Pre-K at Will Rogers with Maddie. Please know I'm so grateful for everything Fletcher is doing and I'm loving all the milestones he's reaching, it was just sad not to drop off another Burns kid at WRE today. How neat it would be for Maddie and Fletcher to go to school together, see each other in the halls, her to be protective of him...blah blah blah cry cry cry! It's been a hard day but I am happy for my girls and I know it's going to
be a great school year for them.
Our sweet second grader!
Kayleigh has had a very active summer. We drove her to Mississippi to visit her maternal grandparents and she stayed for four weeks! Craig, Maddie and I only stayed for a few days. We had a great time seeing family and friends. Her grandparents also took Kayleigh and one of her friends Marley to Gulf Shores and they had a blast! Laying on the beach and shopping what more could two teenage girls want? Kayleigh is now 15 and 1/2 years old so you know what that means? We're about to have a driver on our hands! UGH! How can it be that she's old enough to drive? It seems like yesterday that I was taking her to her first day of school and snapping pictures with teachers and new backpacks and lunch boxes! She's really a delightful young lady and we're so proud of her! We're praying that this year is great and that she enjoys learning!
The girls went back to school today. It's official we have a sophomore and a second grader! Today has been an emotional day for me. This morning I realized that if Fletcher lived at home he would've started Pre-K at Will Rogers with Maddie. Please know I'm so grateful for everything Fletcher is doing and I'm loving all the milestones he's reaching, it was just sad not to drop off another Burns kid at WRE today. How neat it would be for Maddie and Fletcher to go to school together, see each other in the halls, her to be protective of him...blah blah blah cry cry cry! It's been a hard day but I am happy for my girls and I know it's going to
be a great school year for them.
Our sweet sophomore!
Our sweet second grader!Mrs. Pingleton, Maddie's 2nd grade teacher
My boys! Oh how I love them!
Sitting up all by himself and quite proud!!
Playing on the mat with mommy!
Legos!!
Kayleigh has had a very active summer. We drove her to Mississippi to visit her maternal grandparents and she stayed for four weeks! Craig, Maddie and I only stayed for a few days. We had a great time seeing family and friends. Her grandparents also took Kayleigh and one of her friends Marley to Gulf Shores and they had a blast! Laying on the beach and shopping what more could two teenage girls want? Kayleigh is now 15 and 1/2 years old so you know what that means? We're about to have a driver on our hands! UGH! How can it be that she's old enough to drive? It seems like yesterday that I was taking her to her first day of school and snapping pictures with teachers and new backpacks and lunch boxes! She's really a delightful young lady and we're so proud of her! We're praying that this year is great and that she enjoys learning!
Maddie and Kayleigh one last hug!
Craig and I are doing great! He's just working away and I'm so grateful to have a husband who goes to work each day without complaining to provide for his family!! God is good to the Burns family! Craig was invited to his college football 20 year reunion in Mississippi. We had a great time meeting all these football players we have heard about for years!
Craig and his linemen buddies! Go Choctaws!
On our quick trip to Mississippi
Thursday, July 23, 2009
Just for fun...
Fletcher loves brushing his teeth theses days....
Lovin' on each other...
Going through Mommy's purse...
Friday, July 17, 2009
Fletcher's Story Part 4
I began writing Fletcher's story and got side tracked awhile ago. Well, Maddie is sick and we've been home all day. So, I decided today would be a good day to 'finish' the story. This is the fourth installment if you'd like to read the first three they're on this blog as well. Click on 'Fletcher's Story' on the side bar.
Here goes...Fletcher was hospitalized 4 more times that year. Each time we went straight to the PICU and he would be intubated each time. In August 2005 after 16 days at home Fletcher had to be hospitalized again. We were in the PICU for 41 days. After having an Echocardiogram we found out that Fletcher had a heart condition called IHSS. (Idiopathic Hypertrophic Subaortic Stenosis) Meaning Fletcher's heart was working and pumping so hard the muscle had grown bigger creating a stenosis and it was not allowing the blood in his heart to flow properly therefore he was retaining fluid in his lungs. Treatment options were up in the air because they weren’t sure what his underlying problem was. They’d been treating his lungs so aggressively they didn’t know if his lungs were causing his heart problems or if his heart was causing his lung problems. They began treating Fletcher with beta-blockers and calcium channel blockers, which are blood pressure medications. We went home on October 9, 2005 on the blood pressure meds. On October 27, 2005 I took Fletcher to what I thought was going to be a routine cardiology appointment. Instead that day will forever be remembered as the last day Fletcher lived in our home. Our cardiologist, Dr. Razook did an echo and EEG that day and decided the medication wasn’t working. Fletcher’s numbers were off the charts and he needed to be hospitalized, but first Dr. Razook wanted a second opinion from our pediatrician, Dr. Albiek. So, we left one doctor’s office to go to another and left Dr. Albiek’s office on a stretcher to go straight to Children’s Hospital via an ambulance. Now we’d been to Children’s Hospital for a heart cath but never been hospitalized there. Dr. Albiek pulled some strings so we were admitted directly to the PICU. Well, that little move resulted in us being treated like lepers, because according to one nurse, ‘we didn’t go through the proper channels to get there’. What she meant was we didn’t sit in the ER with 5000 other people with our VERY sick baby. Needless to say, Children’s Hospital was not my favorite place. No one knew Fletcher there and none of the nurses or doctors loved and treated him the way we had become accustomed to at Baptist Hospital. But we had to be there because that’s where the heart docs were. Anyway, within the first few days of being hospitalized we found out that Fletcher had para-influenza and he was getting sicker each day. It also turned out that they wanted him to have open-heart surgery to repair the stenosis on his heart. He was so sick and one of the intensivist told me they had done all they could do for Fletcher and left me standing at his bedside feeling like I had been run over by a mack truck. Since he was sick they didn’t want to operate on him, but if they didn’t he was going to die. On November 10, 2005 Fletcher had open-heart surgery. It was a great success. The doctors were very pleased with how well the surgery and recovery process went. The week before he had surgery they put Fletcher on an INO ventilator, so he was on two vents at one time. Well, two days after surgery they weaned him completely off of the INO vent, he had one of two chest tubes removed, he also had a temporary pacemaker and he no longer needed it so it was removed. Three days after coming off the INO vent they tried to wean him off the regular vent. Well, that lasted about 6 hours and they intubated him again. They tried again to extubated five days later with no success. For two days his heart rate was a little high, but the doctors weren't concerned since the stenosis was gone. The plan was to try and get him off the vent, have some recovery time then take our boy home! This would mean that his heart problem had caused his lung problems and since his heart was fixed and we could go home and live our lives. They could not get Fletcher off of the vent so after 25 days at Children’s Hospital the heart surgeon, Dr. Pastuszko asked us if we’d like to go back to Baptist Hospital to see if they could get him off of the vent. We said YES!! We were out of there within a few hours. So, on November 21, 2005 we went back to what had become our home away from home, Baptist Hospital. We got all settled and the next day would be a day of meeting with doctors and trying to come up with a plan to wean Fletcher off of the vent. They tried several times to extubated Fletcher with no success. They told us it was time to look into long term care for Fletcher. Craig and I had to make some tough decisions. We prayed and we were prayed for and we found peace with our decision. Fletcher was unable, at that point to come off of the ventilator, he couldn’t even tolerate the weaning process. Which told us his lungs had been causing his heart problems. His heart was fixed but his lungs were not. Craig and I, along with the PICU doctors and our pediatrician agreed that Fletcher would need a tracheostomy and ventilator support. The way that our insurance worked we couldn’t afford to have a ventilator in our home, so after the surgery and some recovery time at Baptist, Fletcher went to The Children's Center in Bethany. Craig and I toured the facility and found it to be a beautiful place where he would receive excellent care. Fletcher would have 24 hour medical care and be able to have physical, speech and occupational therapy several times a week, which was so important since he had been in and out of hospitals for nearly 9 months. His little body was weak and he’d get what he needed at The Children's Center. Our prayer was that his time there would rehabilitate him so he could get off the ventilator and come home for good. We talked at length with the girls and felt like they had a good understanding of what was going on with their sweet baby brother.
At that point, Fletcher’s heart was working properly. Of course, his lungs were still very sick and they were trying some new medication to help his lungs. He was starting to have really good days and smiling a lot. That smile of his made everything alright!:) He had 6 teeth, 4 on top and 2 on bottom! He weighed about 171/2 pounds! He was growing up on us! We knew Fletcher would spend his first Christmas and his first birthday in a facility of some kind and we asked if it was possible for him to stay at Baptist. We loved the nurses and doctors there and were honored for him to spend a few more 'first' with them! He turned 4, 7, 8, 9, & 11 months in that hospital, one of the respiratory therapist found his first tooth and he spent this first Thanksgiving in the PICU.
On December 16, 2005 Fletcher had surgery for a tracheostomy so he could handle being on a vent long term. We celebrated Christmas and his first birthday in the hospital. On January 9, 2006 Fletcher became a patient at TCC. He’s been hospitalized three times since and had numerous surgeries since that day. Days after his third birthday (2007) Fletcher was hospitalized, he was very sick. Everything that was going on with him was so complex and hard to understand and to explain. In November 2007 we found out that Fletcher had Hypophosphatemia Rickets, basically he had the bones of a 95 year old woman. He was very fragile and in critical condition. Fletcher was experiencing bone pain and very easily agitated. At that time we are trying to manage his pain and keep him comfortable without completely sedating him. He was having moments of smiling and giving us kisses. But his times of pain and agitation outweighed those good moments. They took x-rays of Fletcher's extremities. They showed us the films and what we saw was unbelievable. His little bones were bent and bowed and barely had calcium in them. His right arm had several old fractures, meaning his little arm had been broken several times and we didn't even know it! There were no new fractures on his arms and legs. They believed he had some compression fractures on his spine. They told us the problems with his electrolytes (calcium, phosphorus, sodium, potassium, etc.) were not fixable. We were told he was going to die. We had to make some decisions, we had to tell his sisters and grandparents that it was over and we started preparing ourselves for the very worst thing that could happen to any family. After 18 days in the PICU at Baptist Hospital they sent Fletcher back to TCC to die. We knew that only God knew the number of Fletcher's days and nothing that we could do would change His sovereignty. As soon as we got back to TCC things started to turn around. Fletcher was getting stronger with each day, he was happy and didn’t seem to have a care in the world. I believe we were watching a miracle in progress!
Here goes...Fletcher was hospitalized 4 more times that year. Each time we went straight to the PICU and he would be intubated each time. In August 2005 after 16 days at home Fletcher had to be hospitalized again. We were in the PICU for 41 days. After having an Echocardiogram we found out that Fletcher had a heart condition called IHSS. (Idiopathic Hypertrophic Subaortic Stenosis) Meaning Fletcher's heart was working and pumping so hard the muscle had grown bigger creating a stenosis and it was not allowing the blood in his heart to flow properly therefore he was retaining fluid in his lungs. Treatment options were up in the air because they weren’t sure what his underlying problem was. They’d been treating his lungs so aggressively they didn’t know if his lungs were causing his heart problems or if his heart was causing his lung problems. They began treating Fletcher with beta-blockers and calcium channel blockers, which are blood pressure medications. We went home on October 9, 2005 on the blood pressure meds. On October 27, 2005 I took Fletcher to what I thought was going to be a routine cardiology appointment. Instead that day will forever be remembered as the last day Fletcher lived in our home. Our cardiologist, Dr. Razook did an echo and EEG that day and decided the medication wasn’t working. Fletcher’s numbers were off the charts and he needed to be hospitalized, but first Dr. Razook wanted a second opinion from our pediatrician, Dr. Albiek. So, we left one doctor’s office to go to another and left Dr. Albiek’s office on a stretcher to go straight to Children’s Hospital via an ambulance. Now we’d been to Children’s Hospital for a heart cath but never been hospitalized there. Dr. Albiek pulled some strings so we were admitted directly to the PICU. Well, that little move resulted in us being treated like lepers, because according to one nurse, ‘we didn’t go through the proper channels to get there’. What she meant was we didn’t sit in the ER with 5000 other people with our VERY sick baby. Needless to say, Children’s Hospital was not my favorite place. No one knew Fletcher there and none of the nurses or doctors loved and treated him the way we had become accustomed to at Baptist Hospital. But we had to be there because that’s where the heart docs were. Anyway, within the first few days of being hospitalized we found out that Fletcher had para-influenza and he was getting sicker each day. It also turned out that they wanted him to have open-heart surgery to repair the stenosis on his heart. He was so sick and one of the intensivist told me they had done all they could do for Fletcher and left me standing at his bedside feeling like I had been run over by a mack truck. Since he was sick they didn’t want to operate on him, but if they didn’t he was going to die. On November 10, 2005 Fletcher had open-heart surgery. It was a great success. The doctors were very pleased with how well the surgery and recovery process went. The week before he had surgery they put Fletcher on an INO ventilator, so he was on two vents at one time. Well, two days after surgery they weaned him completely off of the INO vent, he had one of two chest tubes removed, he also had a temporary pacemaker and he no longer needed it so it was removed. Three days after coming off the INO vent they tried to wean him off the regular vent. Well, that lasted about 6 hours and they intubated him again. They tried again to extubated five days later with no success. For two days his heart rate was a little high, but the doctors weren't concerned since the stenosis was gone. The plan was to try and get him off the vent, have some recovery time then take our boy home! This would mean that his heart problem had caused his lung problems and since his heart was fixed and we could go home and live our lives. They could not get Fletcher off of the vent so after 25 days at Children’s Hospital the heart surgeon, Dr. Pastuszko asked us if we’d like to go back to Baptist Hospital to see if they could get him off of the vent. We said YES!! We were out of there within a few hours. So, on November 21, 2005 we went back to what had become our home away from home, Baptist Hospital. We got all settled and the next day would be a day of meeting with doctors and trying to come up with a plan to wean Fletcher off of the vent. They tried several times to extubated Fletcher with no success. They told us it was time to look into long term care for Fletcher. Craig and I had to make some tough decisions. We prayed and we were prayed for and we found peace with our decision. Fletcher was unable, at that point to come off of the ventilator, he couldn’t even tolerate the weaning process. Which told us his lungs had been causing his heart problems. His heart was fixed but his lungs were not. Craig and I, along with the PICU doctors and our pediatrician agreed that Fletcher would need a tracheostomy and ventilator support. The way that our insurance worked we couldn’t afford to have a ventilator in our home, so after the surgery and some recovery time at Baptist, Fletcher went to The Children's Center in Bethany. Craig and I toured the facility and found it to be a beautiful place where he would receive excellent care. Fletcher would have 24 hour medical care and be able to have physical, speech and occupational therapy several times a week, which was so important since he had been in and out of hospitals for nearly 9 months. His little body was weak and he’d get what he needed at The Children's Center. Our prayer was that his time there would rehabilitate him so he could get off the ventilator and come home for good. We talked at length with the girls and felt like they had a good understanding of what was going on with their sweet baby brother.
At that point, Fletcher’s heart was working properly. Of course, his lungs were still very sick and they were trying some new medication to help his lungs. He was starting to have really good days and smiling a lot. That smile of his made everything alright!:) He had 6 teeth, 4 on top and 2 on bottom! He weighed about 171/2 pounds! He was growing up on us! We knew Fletcher would spend his first Christmas and his first birthday in a facility of some kind and we asked if it was possible for him to stay at Baptist. We loved the nurses and doctors there and were honored for him to spend a few more 'first' with them! He turned 4, 7, 8, 9, & 11 months in that hospital, one of the respiratory therapist found his first tooth and he spent this first Thanksgiving in the PICU.
On December 16, 2005 Fletcher had surgery for a tracheostomy so he could handle being on a vent long term. We celebrated Christmas and his first birthday in the hospital. On January 9, 2006 Fletcher became a patient at TCC. He’s been hospitalized three times since and had numerous surgeries since that day. Days after his third birthday (2007) Fletcher was hospitalized, he was very sick. Everything that was going on with him was so complex and hard to understand and to explain. In November 2007 we found out that Fletcher had Hypophosphatemia Rickets, basically he had the bones of a 95 year old woman. He was very fragile and in critical condition. Fletcher was experiencing bone pain and very easily agitated. At that time we are trying to manage his pain and keep him comfortable without completely sedating him. He was having moments of smiling and giving us kisses. But his times of pain and agitation outweighed those good moments. They took x-rays of Fletcher's extremities. They showed us the films and what we saw was unbelievable. His little bones were bent and bowed and barely had calcium in them. His right arm had several old fractures, meaning his little arm had been broken several times and we didn't even know it! There were no new fractures on his arms and legs. They believed he had some compression fractures on his spine. They told us the problems with his electrolytes (calcium, phosphorus, sodium, potassium, etc.) were not fixable. We were told he was going to die. We had to make some decisions, we had to tell his sisters and grandparents that it was over and we started preparing ourselves for the very worst thing that could happen to any family. After 18 days in the PICU at Baptist Hospital they sent Fletcher back to TCC to die. We knew that only God knew the number of Fletcher's days and nothing that we could do would change His sovereignty. As soon as we got back to TCC things started to turn around. Fletcher was getting stronger with each day, he was happy and didn’t seem to have a care in the world. I believe we were watching a miracle in progress!
Thursday, July 9, 2009
Can't believe it's been a month since my last post...
So let's see we've had Father's Day, Summer Fun Day at TCC, Fourth of July and we've given Kayleigh's room a little make over. There's so much more that I can't even remember so pictures are going to have to do this time! The pictures are out of order because of blogger. I do not know why it won't let me move the pictures around, oh well. Please know we are all doing very well. Just enjoying summer and all that goes with it. We will leave in the morning to take Kayleigh to her grandparents in Mississippi for her annual summer time trip. Craig, Maddie and myself will return on Monday but Kayleigh will stay for three or four weeks.
Kayleigh's new room
Kayleigh and me painting
July 4th ~ Craig and Fletcher
July 4th ~ our annual Old Navy flag shirts picture at home
July 4th ~ Maddie and Fletcher at home
July 4th ~ Kayleigh and Fletcher (he's really into licking right now)
Fletcher and me that's a power chair he's using!
Kayleigh and Craig ~ going away party for some of our dear friends the Breedlove's
Father's Day ~ Megan, Rodney, (Craig's brother in law) Devon and EmiLee
Father's Day ~ Kristi, (Craig's sister) David (Craig's dad) and Craig
Father's Day ~ Kayleigh and Fletcher at TCC in his bed
Father's Day ~ Kayleigh, Maddie and Fletcher at TCC in his bed
Father's Day ~ Fletcher and me, like I said he's really into licking these days
Father's Day ~ Craig, David and Fletcher three generations
Father's Day ~ Maddie, Craig, Kayleigh and Fletcher
Maddie summer fun day at TCC
Fletcher and Dawn (my sister) and a group of her co-workers volunteering at TCC
Fletcher on our way to meet his new cardiologist
Kayleigh's new room
Kayleigh and me painting
July 4th ~ Craig and Fletcher
July 4th ~ our annual Old Navy flag shirts picture at home
July 4th ~ Maddie and Fletcher at home
July 4th ~ Kayleigh and Fletcher (he's really into licking right now)
Fletcher and me that's a power chair he's using!
Kayleigh and Craig ~ going away party for some of our dear friends the Breedlove's
Father's Day ~ Megan, Rodney, (Craig's brother in law) Devon and EmiLee
Father's Day ~ Kristi, (Craig's sister) David (Craig's dad) and Craig
Father's Day ~ Kayleigh and Fletcher at TCC in his bed
Father's Day ~ Kayleigh, Maddie and Fletcher at TCC in his bed
Father's Day ~ Fletcher and me, like I said he's really into licking these days
Father's Day ~ Craig, David and Fletcher three generations
Father's Day ~ Maddie, Craig, Kayleigh and Fletcher
Maddie summer fun day at TCC
Fletcher and Dawn (my sister) and a group of her co-workers volunteering at TCC
Fletcher on our way to meet his new cardiologist
Sunday, June 7, 2009
Dreamnight at the Zoo...
Friday, Fletcher went to the zoo for the first time ever! The best part was that Craig, Kayleigh, Maddie and I went with him! Our whole family was at the zoo together. I never thought that would happen. The Oklahoma City Zoo held a private event called 'Dreamnight at the Zoo'. It was a complimentary evening for families with children with disabilities. Chickfila fed everyone, the zoo gave each child a stuffed monkey, there was an opportunity to have a free family photo made (the line was really long so we didn't participate in that), the rides were free as well. Fletcher LOVED walking around the zoo and he HATED stopping to look at the animals! :) He's such a toot sometimes. The fresh air did us all good. Being together doing something 'normal' was a blessing for us as a family. Thank you OKC Zoo for the gift you gave our family!We also saw a few unexpected people as well. The first person we saw was Fletcher's home health nurse Kristi. She was such a blessing to our family when we cared for Fletcher in our home that first year of his life. Then we saw one of our buddies that used to be at TCC Carson and his family. How fun was that? Lots!! Then there were at least three people that stopped us and said, 'is that Fletcher from TCC?' Ha! My Fletcher...such a popular little guy! Kind of hard to forget, right?! :)
Fletcher loves to ride in the car...
He's unhappy because his wheelchair is NOT moving...
Looking for the red panda...
Fletcher and his big sis Kayleigh...
Me, Fletcher and Maddie. He just pinched her so she's whining about it...
a little video...
Fletcher loves to ride in the car...
He's unhappy because his wheelchair is NOT moving...
Looking for the red panda...
Fletcher and his big sis Kayleigh...
Me, Fletcher and Maddie. He just pinched her so she's whining about it...a little video...
Wednesday, June 3, 2009
So fun and so smart...
This kid of mine is such a blessing to me. Fletcher is really making some nice progress in a lot of areas. Today his speech therapist, Heather told me that Fletcher's going to be wearing his speaking valve every time he's up in his wheelchair. He's using his voice so much now. Heather is working with Fletcher on saying 'hi' but it's coming out more like 'hi hi' and I love it!! Fletcher loves people and anytime someone walks into his unit he waves and blows kisses like crazy. How fun would it be if he was able to say 'hi' to everyone who walks in? Absolutely fabulous!! Maddie and I went to class with Fletcher today which was good and bad. Bad only because when he's with me while in his wheelchair he EXPECTS me to take him for a walk. So Maddie and I took him to class and he was really upset with me for not taking him for a walk. Maddie and I had to sit where he couldn't see us so he would cooperate with his teacher. The main reason we wanted to go with Fletcher to class today was because he was going to be writing a letter on the computer. I just had to see it with my own eyes. Well, it was so exciting. Technology today is really making it possible for people of all kinds to communicate. The computer was set up with two switches that would activate choices. One would give him choices and when he selected what he wanted he would push the other switch to make the choice. Fletcher choose to write a letter to his Aunt Dawny today. It's hard to explain so hopefully I caught enough of it on tape that you can see him in action. But, like I mentioned earlier he wasn't really happy with me to begin with.
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