Friday, July 17, 2009
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!
Tuesday, December 4, 2007
Tuesday, November 27, 2007
Fletcher weighed 7’9 when he was born and when we brought him home he weighed 6’15. We never really were able to get him to eat like he was supposed to and we were in our pediatrician’s office at least once a week. She was not aggressive and we didn’t feel like she was up to a patient like Fletcher. He cried all the time and still didn’t eat or sleep. We never took him anywhere except to doctor appointments and sometimes church, because he was always unhappy. When he was about 16 weeks old he was having some respiratory problems and we were in the pediatrician’s office three times that week. On April 20, 2005 we went to the pediatricians office and she sent us home with nose spray and ordered round the clock breathing treatments. A home health nurse came that afternoon and put an NG tube in his nose so we could feed him. Fletcher weighed 8’11. That evening Craig’s parents came over and sent the two of us out to dinner. By the time we got home Fletcher was not okay, something was terribly wrong with him. As soon as I saw him I started to cry. Craig and I took Fletcher to the ER at Mercy Hospital. We were there for about 5 hours, they tried to intubate him two times and on the third attempt they were successful. Mercy Hospital does not have a PICU so they sent us to Baptist Hospital. Once we were there they placed Fletcher on a ventilator and gave him a drug to paralyze him, so he could get some much needed rest. One of the PICU doctors, Dr. Khichi took Craig and I to a conference room and told us Fletcher had pneumonia in both lungs, was malnourished and failure to thrive. We weren’t able to see Fletcher until after our talk with Dr. Khichi. I will never forget the site of my sweet baby with a tube down his throat, a machine breathing for him and him lying there lifeless! Craig and I just stood at the end of his hospital bed holding each other crying. It was a nightmare. The nurses caring for him convinced us to go home and get some rest. We were exhausted so we took their advice and went home for a few hours and made phones calls and tried to sleep. Again we were ‘visiting’ Fletcher each day. I was with him everyday all day and Craig would come on his lunch and after work.
Intubated for the first time
Craig holding Fletcher after 13 days
We met with many doctors while Fletcher was in the hospital. One doctor in particular was Dr. Morris a GI doctor he recommended that Fletcher have a g-tube placed in his tummy so he could get the nutrition he needed and a procedure called a fundoplication this would help with any reflux problems. I remember thinking that a feeding tube would be the end of the world! Craig and I prayed and were prayed for and we agreed that this was what Fletcher needed. We wanted the best for him. Fletcher had his feeding tube and the fundoplication on May 2, 2005. Everything went well, the nurses tried to keep him as comfortable as possible without making him too dependent on the ventilator. His lungs were clearing and we hoped he'd be off the ventilator soon. He also had the MRI while he was in the hospital and it came back normal! Praise the Lord! Boy, were we thankful for such great news. They also tested him for cystic fibrosis. And it came back negative. This little boy baffled the PICU doctors. They didn’t know a lot about the Nevus (his skin condition) so they weren’t sure why he was having feeding issues and needing the vent. Anyway after thirteen days on the vent they extubated Fletcher and we were finally able to hold him again. After 48 hours we went to the regular pediatric floor for three days. On May 8, 2005, Mother’s Day, after 18 days in the hospital Fletcher was discharged. We now had a way to feed him and the hope was that he would gain weight and catch up on the milestones he had missed. We also would have a home health nurse coming to our home 3 times a week. We went home hopeful. As soon as we got home we changed pediatricians. We had our first appointment with Dr. Albiek on June 1, 2005 he was caring and compassionate we knew we had the right doctor this time. Fletcher seemed to be doing well at home. He was gaining some weight and weighed around 10 pounds. On June 8, 2005 Fletcher was having a really tough day and our home health nurse Kristi, suggested that Craig and I take Fletcher to the ER. Sure enough he had pneumonia and was intubated and on the ventilator again. Dr. Albiek met us in the PICU at about 10:00 pm amazed that we were back in the hospital. We were in the hospital for 17 days. Fletcher was on the vent for 5 days (in the PICU) and 10 days on the floor requiring oxygen. For some reason we could not wean Fletcher off of the oxygen. So, on June 25, 2005 we went home with some more equipment, a concentrator, portable 02, pulse ox meter and a suction machine. After being at home with a feeding pump and all that goes with it we had run out of DME (Durable Medical Equipment) meaning our insurance would not pay the $350.00 a month bill for the new equipment. The Lord was so good to us in that the VP of the home health equipment company happened to be the father of one of Craig’s childhood friends. Coincidence, I don’t think so! Anyway, he gave us the equipment for $50.00 a month. We were so grateful for this blessing that we knew only came from the Lord! Let me back up just a bit, right before we left the hospital, one of the PICU doctors, Dr. Griggs came to Fletcher’s hospital room and suggested that we place Fletcher in The Children’s Center, short term, of course. I was devastated, appalled, and offended because I thought Dr. Griggs didn’t think I couldn’t take care of my baby! Of course that wasn’t the case, I have lived in Oklahoma City all of my life and didn’t really know anything about TCC, I thought it was a place you sent babies to die and I wanted no part of it.
At home on oxygen
Friday, November 2, 2007
Fletcher in the NICU 12/30/04
On December 30, 2004 at 8:12 am Fletcher Samuel Burns was born via scheduled c-section. I remember being so emotional that morning, crying before we left to go to the hospital. When they were getting me ready for the c-section I couldn’t look at Craig without crying. He was waiting outside the operating room door as they were preparing me and every time he looked at me I would cry uncontrollably. I was a basket case! I just wanted Fletcher to get out my tummy so I could hold him! Well, that didn’t happen. Instead after Dr. Hager delivered Fletcher the nurses took him over to the corner of the room to get cleaned up. I only saw a glimpse of Fletcher and I could tell something wasn’t right with his skin. And the next thing we knew the NICU doctor was in the OR and she took Fletcher to the NICU. It seemed as though no one knew what was going on especially Craig and me! As they were putting me back together sweet Dr. Hager told us that Fletcher had some kind of rash and that they would do some lab work and try to figure out what was wrong. I did not see or hold him until an agonizing eight hours later. Since I had a c-section I had to recover for eight hours before I could go upstairs to see him. Someone brought me a Polaroid picture of Fletcher so I could ‘see’ him. I must have looked at that picture a thousand times. Craig and I knew in our hearts it wasn’t a rash covering his sweet little face. But each day we were in the hospital family and friends would say, ‘that rash is clearing up’ or ‘his rash looks better today’. Thankfully we had already prepared ourselves for the worst. That is pretty funny to think about NOW, that a so-called rash could be the worst possible thing wrong! After my eight hours of recovery Craig wheeled me up to the NICU to see my sweet boy. I wasn’t prepared for what I saw. Craig was so thoughtful and tried to explain everything to me. Fletcher was requiring oxygen so they had this clear plastic box over his little face. He had a tube in his mouth and he was hooked up to all kinds of monitors. I was able to hold him, but I was so afraid. I was afraid I wasn’t going to be able to bond with him. Afraid I’d hurt him. Afraid of all the wires and tubes. Afraid for his future and people being mean to him because he looked different. I was a mess. Well, I went home after four days in the hospital Fletcher did not. I will never forget coming home and seeing the “Welcome home Mommy and Fletcher” sign Kayleigh and Maddie had made. It was almost unbearable to walk in the door without my baby. I tried to be brave for the girls but it was too much. I told everyone I was tired and I went to my room and just cried. It was awful. I did not know how to do this. I hadn’t thought beyond the moment. I think I must have been in shock. Somehow Craig knew what to do. So someone took me to the hospital each day and dropped me off so I could be with Fletcher and each night after he got off work Craig came to the hospital. Unbeknownst to us, this was the beginning of what we now call our life. Fletcher was in the NICU for 19 days. He was there because no one knew what was up with his skin, his right eye would not open completely and on top of all that he would not eat. The doctors would not let us take Fletcher home until he could take 45 cc’s of formula consistently. That’s only an ounce and a half! It was sheer torture making him take a bottle. We had to work with a speech pathologist to learn techniques of how to HOLD his bottle so he would take the required amount. It was crazy to us. We had just entered a whole new world and we were clueless. We thought if we could just get him home, he’d eat. Not so my friends. Poor little Fletcher was miserable. He cried constantly and he wasn’t really big on sleeping either. Craig and I were beside ourselves. We did not know what to do with this baby who didn’t eat or sleep and cried all the time. But somehow the more he needed me the more I loved him.
Holding Fletcher for the first time
Daddy and Fletcher on day 11 in the NICU
Holding Fletcher on day 17 in the NICU
The first picture of all three of our children together day 7 in the NICU
Fletcher's first night at home. No tubes or wires!