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AnnaSophia is scheduled to have an MRI of her chest tomorrow, May 8th. Last cardiac clinic revealed some things that left the doctors with questions and me with a lump in my throat.
Let me back up a little bit.
April 3rd, AnnaSophia started to get sick. At first, it didn't seem so bad. She had some diarrhea, but was happy, alert and still hungry. Well, the diarrhea progressed and then the vomiting started. I'm sure some people would think, "What's the big deal? Kids get sick.". The problem is when a heart transplant kid gets sick, there are complications that other children don't have to deal with, like keeping immune suppression medication down. Not only was she having difficulty keeping her anti-rejection medication down, but she was getting dehydrated. Both are bad.
By Friday, I made the decision to take her into the emergency room. There is always a mini battle in my mind as to whether to make the journey to Denver, an hour away, or take her to our local E.R. She was so limp and sick that I thought it would be better to take her to the closer hospital. She received good care, medication to stop the nausea and vomiting, and we were able to get her to drink fluids. Transplant called and ordered some blood tests to check her for EBV (Ebstein Barr Virus) and CMV (Cytomeglovirus). We also redosed her immune suppression medication in an attempt to keep her levels stable and avoid rejection, which is always a concern when she gets this sick.
Easter 2012 was spent at home with AnnaSophia snuggling on my lap. It was not our traditional "go-to-church-and-visit-family-and-have-Easter-egg-hunts" kind of Easter, but I was thankful for my family that came to our home to wish us well.
AnnaSophia slowly recovered, but in the two weeks that she was sick, she lost 3 pounds. Three pounds for a child that only weighs 35 pounds, was a lot.
After talking with transplant, it was decided that after she improved for a couple of weeks, a visit to cardiac clinic was the next step. Of course, she is such a champ and was great with the blood draw, blood pressure, weight and height, echo and exam. When our transplant coordinator was determined to have the doctor look at her echo before we left, alarms in my mind started going off. The doctor wanted us to repeat the echo.
Apparently, the doctor saw an area of her left ventricle that was not relaxing like it should after contracting. The second echo was performed with myself, the doctor, transplant coordinator and nurse crowding into the small room to view the ultrasound. Once the area of concern was pointed out, it was plain as day. A small area of her left ventricle looked really thick.
The first thing I that went through my mind was REJECTION. I remember from the last time that rejection for AnnaSophia looked like a stiff left ventricle. The walls were thick and not pumping well. This appointment, I was told that instead of coming every four months for cardiac clinic, we would now be coming in every month to monitor that area of her ventricle.
I went home trying not to get too excited over the news. At least the transplant team is on top of things and watching her closely, right??? By 4pm that afternoon, I got another call from transplant. According to the doctor in charge, he was not as concerned about the ventricle issue as he was about something that shocked me even more.
The doctor saw a mass on her heart.
AnnaSophia has a 1cm mass inside of the pericardium beneath her ventricles. The first thing that popped into my mind was post transplant lymphoma. This is the really scary stuff that no parent wants to hear. "Your child has cancer." The doctor clarified that the mass looks more like the consistency of a liver, possibly a blood clot. The thing that scares me is that this mass was not there when they did the echo on her in February, but it is now.
My mind has been wrestling with this information for a week and a half now. My intellect is battling my emotions. I keep thinking things like, "It can't be cancer, because she isn't EBV positive." I keep wondering how a blood clot could appear on a healthy heart.
My hope is that after her MRI tomorrow morning, I will have more answers. For the time being, I just ask that AnnaSophia be remembered in your prayers this week. I will post again after her MRI.
Blessings.
Let me back up a little bit.
April 3rd, AnnaSophia started to get sick. At first, it didn't seem so bad. She had some diarrhea, but was happy, alert and still hungry. Well, the diarrhea progressed and then the vomiting started. I'm sure some people would think, "What's the big deal? Kids get sick.". The problem is when a heart transplant kid gets sick, there are complications that other children don't have to deal with, like keeping immune suppression medication down. Not only was she having difficulty keeping her anti-rejection medication down, but she was getting dehydrated. Both are bad.
By Friday, I made the decision to take her into the emergency room. There is always a mini battle in my mind as to whether to make the journey to Denver, an hour away, or take her to our local E.R. She was so limp and sick that I thought it would be better to take her to the closer hospital. She received good care, medication to stop the nausea and vomiting, and we were able to get her to drink fluids. Transplant called and ordered some blood tests to check her for EBV (Ebstein Barr Virus) and CMV (Cytomeglovirus). We also redosed her immune suppression medication in an attempt to keep her levels stable and avoid rejection, which is always a concern when she gets this sick.
Easter 2012 was spent at home with AnnaSophia snuggling on my lap. It was not our traditional "go-to-church-and-visit-family-and-have-Easter-egg-hunts" kind of Easter, but I was thankful for my family that came to our home to wish us well.
AnnaSophia slowly recovered, but in the two weeks that she was sick, she lost 3 pounds. Three pounds for a child that only weighs 35 pounds, was a lot.
After talking with transplant, it was decided that after she improved for a couple of weeks, a visit to cardiac clinic was the next step. Of course, she is such a champ and was great with the blood draw, blood pressure, weight and height, echo and exam. When our transplant coordinator was determined to have the doctor look at her echo before we left, alarms in my mind started going off. The doctor wanted us to repeat the echo.
Apparently, the doctor saw an area of her left ventricle that was not relaxing like it should after contracting. The second echo was performed with myself, the doctor, transplant coordinator and nurse crowding into the small room to view the ultrasound. Once the area of concern was pointed out, it was plain as day. A small area of her left ventricle looked really thick.
The first thing I that went through my mind was REJECTION. I remember from the last time that rejection for AnnaSophia looked like a stiff left ventricle. The walls were thick and not pumping well. This appointment, I was told that instead of coming every four months for cardiac clinic, we would now be coming in every month to monitor that area of her ventricle.
I went home trying not to get too excited over the news. At least the transplant team is on top of things and watching her closely, right??? By 4pm that afternoon, I got another call from transplant. According to the doctor in charge, he was not as concerned about the ventricle issue as he was about something that shocked me even more.
The doctor saw a mass on her heart.
AnnaSophia has a 1cm mass inside of the pericardium beneath her ventricles. The first thing that popped into my mind was post transplant lymphoma. This is the really scary stuff that no parent wants to hear. "Your child has cancer." The doctor clarified that the mass looks more like the consistency of a liver, possibly a blood clot. The thing that scares me is that this mass was not there when they did the echo on her in February, but it is now.
My mind has been wrestling with this information for a week and a half now. My intellect is battling my emotions. I keep thinking things like, "It can't be cancer, because she isn't EBV positive." I keep wondering how a blood clot could appear on a healthy heart.
My hope is that after her MRI tomorrow morning, I will have more answers. For the time being, I just ask that AnnaSophia be remembered in your prayers this week. I will post again after her MRI.
Blessings.
