Yesterday we learned the true meaning of having an immunosuppressed child. Dylan had a little bit of a cold about two weeks ago and had some croup with it. We treated the croup with a single dose of Dexamethasone (a steroid used to treat inflammation in the airway). I thought we had escaped anything serious and went on about our usual business. Dylan returned to school and seemed to be doing okay. During the weekend Dylan continued to cough and started complaining that "stuff" was coming up when he did. My first thought was just something post nasal and it was not a big deal. We have always been told that coughs can last for weeks after a cold and not to be worried. However, Monday night things took a turn in the wrong direction.
There is something to be said about a parent's intuition. Noah and I are not doctors and only know Dylan, but over the years we have learned to read this child like a book. With Dylan's anti-rejection medication his body responds differently to illness. Most children get a high fever when they are fighting something serious off. With Dylan though this is not always the case. His system is so suppressed that his body can't even produce a fever. We noticed his cough was getting worse. It was wet, hacking and causing him to go into coughing fits to the point of gagging. I listened to his lungs with a stethoscope and heard no wheezing so I knew it was not his asthma. After about 4 hours of on and off coughing Monday night I made the decision that Dylan would be visiting the doctor and not attending school. Given Dylan's current medical status he is highly prone to developing pneumonia which can be life threatening. So first thing in the morning I called to make an appointment. To my disappointment Dylan's regular doctor was out for the week.
Having a kid like Dylan you form bonds with the doctors who care for him. We have friendships with these people and we trust in them. Every time Dylan sees a new doctor I have a bit of a panic attack. There is NOTHING simple about my child. There never has been and unfortunately there never will be. Yes, Dylan will get normal kid stuff and every time he gets sick it is not necessarily an emergency, but it CAN be. So when I see an new doctor with him I am on defense mode. Don't get me wrong I know they are doctors and they went to med school too, but they don't know Dylan. Dylan's regular doctor, Dr. Morales, can look at Dylan and know if something is wrong or not. He has cared for my little guy since he was just about one. I have had confrontations with doctors in the past. The arrogant doctors who feel they know my child better than I do because they went to school and I didn't. While they learn quickly who the boss is it is still an unnerving place to be in when you are worried for your child's well being.
I was pleasantly surprised yesterday. This doctor put my worries at ease right away. He told me that we would be making all decisions together and that what ever it was it would be treated aggressively given Dylan's medical history. He heard some popping and crackling in Dylan's lower left lobe and suggested we do a chest x-ray to see how bad things looked inside. The verdict...pneumonia. His x-ray looked clear which means we caught this in the very early stages. Dylan was put on a 5 day course of Zithromax. This particular antibiotic works very well at fighting pneumonia, but there is a side affect. It can raise levels of Dylan's Prograf. The anti-rejection medication that got us here in the first place. With a raise the level of this medication it makes his body's immune system even weaker. In situations like this though you have to out weigh the risk versus benefit.
On top of all of this Dylan's EBV is positive again. It is not terribly high, only at about 600 copies, but still positive. Dylan is back on the anti-viral medication twice a day. We will repeat the labs tomorrow to check the levels as well as the Prograf levels. I am really hoping that everything looks good, but I am also expecting things to be off. I guess we will wait and see.
-Amber
There is something to be said about a parent's intuition. Noah and I are not doctors and only know Dylan, but over the years we have learned to read this child like a book. With Dylan's anti-rejection medication his body responds differently to illness. Most children get a high fever when they are fighting something serious off. With Dylan though this is not always the case. His system is so suppressed that his body can't even produce a fever. We noticed his cough was getting worse. It was wet, hacking and causing him to go into coughing fits to the point of gagging. I listened to his lungs with a stethoscope and heard no wheezing so I knew it was not his asthma. After about 4 hours of on and off coughing Monday night I made the decision that Dylan would be visiting the doctor and not attending school. Given Dylan's current medical status he is highly prone to developing pneumonia which can be life threatening. So first thing in the morning I called to make an appointment. To my disappointment Dylan's regular doctor was out for the week.
Having a kid like Dylan you form bonds with the doctors who care for him. We have friendships with these people and we trust in them. Every time Dylan sees a new doctor I have a bit of a panic attack. There is NOTHING simple about my child. There never has been and unfortunately there never will be. Yes, Dylan will get normal kid stuff and every time he gets sick it is not necessarily an emergency, but it CAN be. So when I see an new doctor with him I am on defense mode. Don't get me wrong I know they are doctors and they went to med school too, but they don't know Dylan. Dylan's regular doctor, Dr. Morales, can look at Dylan and know if something is wrong or not. He has cared for my little guy since he was just about one. I have had confrontations with doctors in the past. The arrogant doctors who feel they know my child better than I do because they went to school and I didn't. While they learn quickly who the boss is it is still an unnerving place to be in when you are worried for your child's well being.
I was pleasantly surprised yesterday. This doctor put my worries at ease right away. He told me that we would be making all decisions together and that what ever it was it would be treated aggressively given Dylan's medical history. He heard some popping and crackling in Dylan's lower left lobe and suggested we do a chest x-ray to see how bad things looked inside. The verdict...pneumonia. His x-ray looked clear which means we caught this in the very early stages. Dylan was put on a 5 day course of Zithromax. This particular antibiotic works very well at fighting pneumonia, but there is a side affect. It can raise levels of Dylan's Prograf. The anti-rejection medication that got us here in the first place. With a raise the level of this medication it makes his body's immune system even weaker. In situations like this though you have to out weigh the risk versus benefit.
On top of all of this Dylan's EBV is positive again. It is not terribly high, only at about 600 copies, but still positive. Dylan is back on the anti-viral medication twice a day. We will repeat the labs tomorrow to check the levels as well as the Prograf levels. I am really hoping that everything looks good, but I am also expecting things to be off. I guess we will wait and see.
-Amber
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