NeeNee's Blog: July 2009

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!

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.