Last night Nic ended up in the ER for a few hours. Mercifully, he did not have to be admitted to the hospital so we were able to come home and sleep (well, sleep as much as a child with a fever who has just endured an ER visit sleeps).
For patients with sickle cell disease, visits to the ER are standard anytime they have a fever over 101 °F. If I notice that Nic is warmer than he should be or is demonstrating any typical signs of illness then I immediately start monitoring his temperature. If he runs a low-grade fever then it's no big deal, but if the fever hits 101 it is time to call in to the doctor and pack for the hospital.
Kids (0-6) with sickle cell disease take a twice-daily does of penicillin based on their age. The dose is too low to fight off infections, but it helps the body keep serious infections under control long enough for the child to receive the medical treatment that they need. Apparently this regime has drastically cut down on the number of kids dying from blood sepsis, acute chest syndrome, pneumonia, and other infections that typically plague children with sickle cell. This is one reason (although there are plenty of others) why children in developed countries have much higher life expectancies than those in the developing world where administering penicillin daily is impractical (it requires refrigeration).
Last night I wasn't too worried about Nicolas having a sickle crisis. I know his hemoglobin is still high, and that his fetal hemoglobin levels are still good enough to make a serious crisis unlikely. Additionally, he had a goopy nose, so it seemed quite possible that he had just developed an ear infection or something of that nature. Had it not been the evening I probably would have gone first to our pediatrician in order to possibly avoid the ER...and those nasty ER co-pays. But even though I suspected that Nic was not having a sickle crisis, it was still important to go in and make sure that he wasn't. If he had been having a sickle-related fever and we skipped going in, the consequences could be very high because a serious infection left untreated, or treated too late, could kill him.
Thankfully the ER was totally empty when we got there. I gave them his name, they printed out his bracelet and took us straight to a pediatric room. The first thing they do is take vitals, check ears/mouth, get him in his hospital gown, and attach a monitor to his big toe. Then they place an IV. That was the hardest part of our visit because (obviously) Nicolas was not enthusiastic about have an IV put in his arm, and because the first one they put in failed so they had to try again. It's always worse the second time. As soon as the IV was in place they took blood samples and sent them straight to the lab. The best thing about having the IV in place is that once it is in the pain is over, so drawing multiple samples or needing to get another one a little later (and they did), is not a big deal. Then they taped Nic up really well so he couldn't access the IV and pull it out like he did last time he was in the hospital.
Next, we waited for our turn in x-ray. When the x-ray tech came she decided to wheel us over there in the bed. I felt a little silly being wheeled through the hospital while holding Nic, but honestly I was so tired at that point that it seemed like a better idea than lugging Nic around with all of his tubes and wires hanging off. Also, it provided entertainment. In x-ray they strapped Nic to a little chair and took shots of his lungs, then sent us back to our room.
Since the ER was so quiet the lab had finished Nic's blood work and the doctor had checked his x-rays, consulted with someone from Nic's hematology group, and determined that Nic was likely not having a sickle crisis. The doctor thinks he has a virus that happens to be going around right now. Still, they can't send him home without a few more precautions. He had to have a strong antibiotic administered through his IV, as well as a bag of fluids to ensure good hydration. The IVs took another forty-five minutes or so, but Nic was fine with it because he got to watch a movie. After that they took Nic's vitals again, unhooked him from his various toes and wires, had me sign a bunch of paperwork, and printed out our home instructions. I got Nic in his PJ's and we headed home.
I think the only thing I didn't manage to fit into the above description (because I am hoping it will not be part of our ER "routine") was the discussion I had with the ER doctor attempting to convince him that Nic does in fact have sickle cell disease. He felt that Nic's hemoglobin was too high for that to even be possible, and tried to tell me more than once that I was mistaken and that Nic only had sickle cell trait! So frustrating. Why would any person in their right mind take their child to the ER for a fever of 101.5 unless they absolutely had to? The ER is not a fun place to spend an evening. Additionally, why would anyone lie about something like that? I am planning on having a talk with our hematologist about this. I'm hoping he can make a note in Nic's file, or give me a letter with his diagnosis so that we don't end up in that situation again. It made me uneasy to leave knowing that the doctor who was treating Nic didn't believe his diagnosis of sickle cell disease. How can I trust that Nic is receiving the best care possible if the doctor doesn't even believe he is sick?
For patients with sickle cell disease, visits to the ER are standard anytime they have a fever over 101 °F. If I notice that Nic is warmer than he should be or is demonstrating any typical signs of illness then I immediately start monitoring his temperature. If he runs a low-grade fever then it's no big deal, but if the fever hits 101 it is time to call in to the doctor and pack for the hospital.
Kids (0-6) with sickle cell disease take a twice-daily does of penicillin based on their age. The dose is too low to fight off infections, but it helps the body keep serious infections under control long enough for the child to receive the medical treatment that they need. Apparently this regime has drastically cut down on the number of kids dying from blood sepsis, acute chest syndrome, pneumonia, and other infections that typically plague children with sickle cell. This is one reason (although there are plenty of others) why children in developed countries have much higher life expectancies than those in the developing world where administering penicillin daily is impractical (it requires refrigeration).
Last night I wasn't too worried about Nicolas having a sickle crisis. I know his hemoglobin is still high, and that his fetal hemoglobin levels are still good enough to make a serious crisis unlikely. Additionally, he had a goopy nose, so it seemed quite possible that he had just developed an ear infection or something of that nature. Had it not been the evening I probably would have gone first to our pediatrician in order to possibly avoid the ER...and those nasty ER co-pays. But even though I suspected that Nic was not having a sickle crisis, it was still important to go in and make sure that he wasn't. If he had been having a sickle-related fever and we skipped going in, the consequences could be very high because a serious infection left untreated, or treated too late, could kill him.
Thankfully the ER was totally empty when we got there. I gave them his name, they printed out his bracelet and took us straight to a pediatric room. The first thing they do is take vitals, check ears/mouth, get him in his hospital gown, and attach a monitor to his big toe. Then they place an IV. That was the hardest part of our visit because (obviously) Nicolas was not enthusiastic about have an IV put in his arm, and because the first one they put in failed so they had to try again. It's always worse the second time. As soon as the IV was in place they took blood samples and sent them straight to the lab. The best thing about having the IV in place is that once it is in the pain is over, so drawing multiple samples or needing to get another one a little later (and they did), is not a big deal. Then they taped Nic up really well so he couldn't access the IV and pull it out like he did last time he was in the hospital.
Next, we waited for our turn in x-ray. When the x-ray tech came she decided to wheel us over there in the bed. I felt a little silly being wheeled through the hospital while holding Nic, but honestly I was so tired at that point that it seemed like a better idea than lugging Nic around with all of his tubes and wires hanging off. Also, it provided entertainment. In x-ray they strapped Nic to a little chair and took shots of his lungs, then sent us back to our room.
Since the ER was so quiet the lab had finished Nic's blood work and the doctor had checked his x-rays, consulted with someone from Nic's hematology group, and determined that Nic was likely not having a sickle crisis. The doctor thinks he has a virus that happens to be going around right now. Still, they can't send him home without a few more precautions. He had to have a strong antibiotic administered through his IV, as well as a bag of fluids to ensure good hydration. The IVs took another forty-five minutes or so, but Nic was fine with it because he got to watch a movie. After that they took Nic's vitals again, unhooked him from his various toes and wires, had me sign a bunch of paperwork, and printed out our home instructions. I got Nic in his PJ's and we headed home.
I think the only thing I didn't manage to fit into the above description (because I am hoping it will not be part of our ER "routine") was the discussion I had with the ER doctor attempting to convince him that Nic does in fact have sickle cell disease. He felt that Nic's hemoglobin was too high for that to even be possible, and tried to tell me more than once that I was mistaken and that Nic only had sickle cell trait! So frustrating. Why would any person in their right mind take their child to the ER for a fever of 101.5 unless they absolutely had to? The ER is not a fun place to spend an evening. Additionally, why would anyone lie about something like that? I am planning on having a talk with our hematologist about this. I'm hoping he can make a note in Nic's file, or give me a letter with his diagnosis so that we don't end up in that situation again. It made me uneasy to leave knowing that the doctor who was treating Nic didn't believe his diagnosis of sickle cell disease. How can I trust that Nic is receiving the best care possible if the doctor doesn't even believe he is sick?
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1 comment:
Amy, I think having a letter from tour doctor is a good idea. I carried one around after each of my thyroid radiations, and cochlear implants. For example, I cannot have MRIs because of the implant, so must carry "proof." Sigh!
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