For the past two weeks, Sean has literally been bouncing off the walls. If it weren’t for the scar on his back, you would never know what he has been through. I guess in my rush to tell everyone what was going on, I forgot to tell him that he had major surgery. He certainly doesn’t seem to realize it! He’s too young to milk it for all of the sympathy that it’s worth. The nurses said he would “self-regulate”, meaning that if physical activity hurts or puts too much strain on his incisions, he won’t do it. I’m guessing he’s not in much pain anymore. He’s back in full force!
We returned home in the evening of Wednesday, September 23. We are glad to be back, but part of me wishes we could have brought the heart monitors and a nurse home with us just for piece of mind. The other part of me is glad the doctors felt that we didn’t need them. Sean’s blood pressure was still a little high at discharge, but he was getting around so well that the doctors just could not justify keeping him in the hospital any longer. They said his blood pressure could be monitored here locally. I think they were sad to see him go- he was a stellar patient. I’m guessing most children in the hospital are a little difficult to examine, but not Sean. Any time a nurse or doctor came in to listen to his heart or take his blood pressure, he would march right over to the chair, lift up his arm and say “take a blood pressure,” or when he would see a stethoscope, he would say “listen to my heart.” It was adorable. I don’t think the doctors and nurses were very used to that.
On Monday, September 28, we went to Sean’s regular cardiologist (Dr. Cummings) for a post-op appointment. Sean’s blood pressure was lower than it had been, but still a little high. We will go back in eight weeks to check his blood pressure again. If it is in the normal range, we may start to wean him off of Enalapril, his blood pressure medication. They will also continue to monitor his mitral valve and the thickening of the walls in the left ventricle to see if, with the elimination of the coarctation, those areas improve. The cardiologist still thinks that his mitral valve will need to be addressed at some point, but there is no way to know if it will be in two months, two years, or twenty years. It just needs be to watched closely.
In November, we have an appointment with Dr. Caplan, a geneticist with the University of Maryland. Sean was evaluated in May 2008 by Dr. Greene in the same office, but has since had some major changes to his medical history (i.e. hearing loss, heart defects). There are some additional genetic tests we’d like to have run on Sean to see if there is a genetic component to his medical issues. We have always assumed there is something there, we just don’t know what it is yet. The tests they conducted last time all came back normal, but there have been advancements in genetic testing over the past two years. The results may be different this time.
Until then, I am hoping we can take a break from doctor offices for a while. We are being extra vigilant with hand washing, etc. to help ward off the flu and other fun illnesses. The flu is basically Sean’s worst enemy right now. He is especially susceptible given his age and heart condition. If only I could keep him in a bubble…
I want to thank you all once again for the wonderful support you have shown to Sean and our family. Your thoughts, prayers, and well wishes mean so much to us. Sean is doing so well…there is no doubt that God heard our prayers. I cannot thank you enough. And Sean thanks you, too:
We returned home in the evening of Wednesday, September 23. We are glad to be back, but part of me wishes we could have brought the heart monitors and a nurse home with us just for piece of mind. The other part of me is glad the doctors felt that we didn’t need them. Sean’s blood pressure was still a little high at discharge, but he was getting around so well that the doctors just could not justify keeping him in the hospital any longer. They said his blood pressure could be monitored here locally. I think they were sad to see him go- he was a stellar patient. I’m guessing most children in the hospital are a little difficult to examine, but not Sean. Any time a nurse or doctor came in to listen to his heart or take his blood pressure, he would march right over to the chair, lift up his arm and say “take a blood pressure,” or when he would see a stethoscope, he would say “listen to my heart.” It was adorable. I don’t think the doctors and nurses were very used to that.
On Monday, September 28, we went to Sean’s regular cardiologist (Dr. Cummings) for a post-op appointment. Sean’s blood pressure was lower than it had been, but still a little high. We will go back in eight weeks to check his blood pressure again. If it is in the normal range, we may start to wean him off of Enalapril, his blood pressure medication. They will also continue to monitor his mitral valve and the thickening of the walls in the left ventricle to see if, with the elimination of the coarctation, those areas improve. The cardiologist still thinks that his mitral valve will need to be addressed at some point, but there is no way to know if it will be in two months, two years, or twenty years. It just needs be to watched closely.
In November, we have an appointment with Dr. Caplan, a geneticist with the University of Maryland. Sean was evaluated in May 2008 by Dr. Greene in the same office, but has since had some major changes to his medical history (i.e. hearing loss, heart defects). There are some additional genetic tests we’d like to have run on Sean to see if there is a genetic component to his medical issues. We have always assumed there is something there, we just don’t know what it is yet. The tests they conducted last time all came back normal, but there have been advancements in genetic testing over the past two years. The results may be different this time.
Until then, I am hoping we can take a break from doctor offices for a while. We are being extra vigilant with hand washing, etc. to help ward off the flu and other fun illnesses. The flu is basically Sean’s worst enemy right now. He is especially susceptible given his age and heart condition. If only I could keep him in a bubble…
I want to thank you all once again for the wonderful support you have shown to Sean and our family. Your thoughts, prayers, and well wishes mean so much to us. Sean is doing so well…there is no doubt that God heard our prayers. I cannot thank you enough. And Sean thanks you, too:
2 comments:
Very happy to hear things with Sean are going so well!!!!
From Ella
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