Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 hi, we just got back from a week long stay at our local hosp. jess was admitted due to what they thought was bacterimia. turns out only her central line is infected and its still ok to use. its colonized with gram + and gram - but is not going into her blood stream. good news!!!! now the bad, they did some normal blood work and found her bone marrow is pumping out baby white cells but her adult white cells are very low. so they did a sed rate and it was very high. 58 the doc said he panics around 40. then they did a c- reactive protein test because it comes down faster then a sed rate. first day it was .56 ( should be 0.0) the second was 1.12. the third day was back to .50. they did a gallum study to look for infection but it was negative. no infection anywhere. bottom line we were told start of a blood cancer, or she had a mild heart attack from all the chills ( her heart rate went over 200 with them) she is better now, no more chills, just very, very tired. can't blame her. thanks for everyones support it really means alot to us. Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 I am so sorry to hear what a tough week you have had. Sometimes it feels like we can all live in hospitals, testing areas, and ER waiting rooms. Please keep us posted to any further information you learn concerning your daughter's health. Try to get some rest. Darla: mommy to Asenath, Zipporrah, and the gang jess's update hi, we just got back from a week long stay at our local hosp. jess was admitted due to what they thought was bacterimia. turns out only her central line is infected and its still ok to use. its colonized with gram + and gram - but is not going into her blood stream. good news!!!! now the bad, they did some normal blood work and found her bone marrow is pumping out baby white cells but her adult white cells are very low. so they did a sed rate and it was very high. 58 the doc said he panics around 40. then they did a c- reactive protein test because it comes down faster then a sed rate. first day it was .56 ( should be 0.0) the second was 1.12. the third day was back to .50. they did a gallum study to look for infection but it was negative. no infection anywhere. bottom line we were told start of a blood cancer, or she had a mild heart attack from all the chills ( her heart rate went over 200 with them) she is better now, no more chills, just very, very tired. can't blame her. thanks for everyones support it really means alot to us. Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 I am so sorry to hear what a tough week you have had. Sometimes it feels like we can all live in hospitals, testing areas, and ER waiting rooms. Please keep us posted to any further information you learn concerning your daughter's health. Try to get some rest. Darla: mommy to Asenath, Zipporrah, and the gang jess's update hi, we just got back from a week long stay at our local hosp. jess was admitted due to what they thought was bacterimia. turns out only her central line is infected and its still ok to use. its colonized with gram + and gram - but is not going into her blood stream. good news!!!! now the bad, they did some normal blood work and found her bone marrow is pumping out baby white cells but her adult white cells are very low. so they did a sed rate and it was very high. 58 the doc said he panics around 40. then they did a c- reactive protein test because it comes down faster then a sed rate. first day it was .56 ( should be 0.0) the second was 1.12. the third day was back to .50. they did a gallum study to look for infection but it was negative. no infection anywhere. bottom line we were told start of a blood cancer, or she had a mild heart attack from all the chills ( her heart rate went over 200 with them) she is better now, no more chills, just very, very tired. can't blame her. thanks for everyones support it really means alot to us. Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 I am so sorry to hear what a tough week you have had. Sometimes it feels like we can all live in hospitals, testing areas, and ER waiting rooms. Please keep us posted to any further information you learn concerning your daughter's health. Try to get some rest. Darla: mommy to Asenath, Zipporrah, and the gang jess's update hi, we just got back from a week long stay at our local hosp. jess was admitted due to what they thought was bacterimia. turns out only her central line is infected and its still ok to use. its colonized with gram + and gram - but is not going into her blood stream. good news!!!! now the bad, they did some normal blood work and found her bone marrow is pumping out baby white cells but her adult white cells are very low. so they did a sed rate and it was very high. 58 the doc said he panics around 40. then they did a c- reactive protein test because it comes down faster then a sed rate. first day it was .56 ( should be 0.0) the second was 1.12. the third day was back to .50. they did a gallum study to look for infection but it was negative. no infection anywhere. bottom line we were told start of a blood cancer, or she had a mild heart attack from all the chills ( her heart rate went over 200 with them) she is better now, no more chills, just very, very tired. can't blame her. thanks for everyones support it really means alot to us. Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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