Poor Nic. He is in a world of misery right now. Ever since his hospital trip a few weeks back he has not been himself. While he was in the hospital he was very withdrawn, and when he came home he barely talked for three days and was whining and unpleasant for some time after that. That last visit had a negative impact on him.
On Wednesday we had our regularly scheduled hematology visit. As soon as we walked into the office Nic focused his eyes on the floor, began shuffling slowly, and stopped talking. He was very nervous about the visit, and even the nurse commented on his unusual behavior. To make things worse, Nic's hematologist had gone home sick that day, and so we had to wait a very long time to see his partner, whom none of us are familiar with. I'm sure she is an excellent doctor, but Nic doesn't know her, and he didn't respond well to being poked and prodded by a stranger.
He is beginning to show signs of his disease. His spleen is swelling because his sickle-shaped cells are being trapped in the small blood vessels and clogging it up. This is very common in children with SCD, but it is a bummer nonetheless. We knew it would happen eventually, but we hoped eventually would come in a few years instead of now. It is possible that the cells could unclog and that his spleen will return to normal, or it is possible for the spleen to get infected and require removal, or for it to naturally destroy itself. While one can live without a spleen, it does impact the efficacy of one's immune system, so it is preferable to maintain a healthy spleen for as long as possible. Another SCD mom warned me that while his spleen is swollen he will be getting sick even more than usual and that we need to be even more careful, which is not easy with siblings.
Worse, Nicolas has developed a heart murmur. This is also expected in the course of SCD, because anemia forces the heart to work extra hard. The problem is that Nic really isn't very anemic right now. His January blood work showed a hemoglobin count of 11.1. It dropped while he was sick to 9.6 (iron levels generally dip when kids are sick), but that still isn't particularly low. In addition, the particular type of murmur (a flow murmur) caused by SCD has a certain sound, and the hematologist said that Nic's murmur does not sound like a normal SCD flow murmur so he needs to have an echo-cardiogram done. Poor Nic does not need any more trips to the hospital right now, but he has to go back in less than two weeks for the test. While the test is painless, he doesn't know that, and I know he will be scared.
All this to say, please say a prayer for Nicolas. He has such a tender heart, and he is just so sad right now. Please pray for his ability to process all of these events. Pray for his spleen to return to a healthy size. Pray that he will be willing to drink more water to assist his body in that effort. Pray that his heart murmur will be benign and not require any further action. Pray that his hemoglobin will rebound, and that his fetal hemoglobin levels will continue to stay elevated (he's at 28% right now, which is still great). Pray for peace during his heart test and for wisdom for the doctor reading the results. And pray for his mom and dad...it isn't easy watching him struggle.
On Wednesday we had our regularly scheduled hematology visit. As soon as we walked into the office Nic focused his eyes on the floor, began shuffling slowly, and stopped talking. He was very nervous about the visit, and even the nurse commented on his unusual behavior. To make things worse, Nic's hematologist had gone home sick that day, and so we had to wait a very long time to see his partner, whom none of us are familiar with. I'm sure she is an excellent doctor, but Nic doesn't know her, and he didn't respond well to being poked and prodded by a stranger.
He is beginning to show signs of his disease. His spleen is swelling because his sickle-shaped cells are being trapped in the small blood vessels and clogging it up. This is very common in children with SCD, but it is a bummer nonetheless. We knew it would happen eventually, but we hoped eventually would come in a few years instead of now. It is possible that the cells could unclog and that his spleen will return to normal, or it is possible for the spleen to get infected and require removal, or for it to naturally destroy itself. While one can live without a spleen, it does impact the efficacy of one's immune system, so it is preferable to maintain a healthy spleen for as long as possible. Another SCD mom warned me that while his spleen is swollen he will be getting sick even more than usual and that we need to be even more careful, which is not easy with siblings.
Worse, Nicolas has developed a heart murmur. This is also expected in the course of SCD, because anemia forces the heart to work extra hard. The problem is that Nic really isn't very anemic right now. His January blood work showed a hemoglobin count of 11.1. It dropped while he was sick to 9.6 (iron levels generally dip when kids are sick), but that still isn't particularly low. In addition, the particular type of murmur (a flow murmur) caused by SCD has a certain sound, and the hematologist said that Nic's murmur does not sound like a normal SCD flow murmur so he needs to have an echo-cardiogram done. Poor Nic does not need any more trips to the hospital right now, but he has to go back in less than two weeks for the test. While the test is painless, he doesn't know that, and I know he will be scared.
All this to say, please say a prayer for Nicolas. He has such a tender heart, and he is just so sad right now. Please pray for his ability to process all of these events. Pray for his spleen to return to a healthy size. Pray that he will be willing to drink more water to assist his body in that effort. Pray that his heart murmur will be benign and not require any further action. Pray that his hemoglobin will rebound, and that his fetal hemoglobin levels will continue to stay elevated (he's at 28% right now, which is still great). Pray for peace during his heart test and for wisdom for the doctor reading the results. And pray for his mom and dad...it isn't easy watching him struggle.
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1 comment:
I am so sad for Nic. He is in my prayers.
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