His labs this week weren't too bad, everything (other than his platelets) are border-lined low.
Platelets-54 (last week it was 43, normal is 150-450)
Hemoglobin-13 (last week it was 12.7, normal is 14-16)
Neutrophils are 68, which is good, means his body is producing the cells it needs to.
His Bilirubin has risen a little bit, not by much, but I am keeping an eye on his skin and eye color for jaundice. Back in December, it shot up within 2 days, and since this is around the time he flares up anyway, being extra cautious.
We see Dr. Gold (for the first time since May) on Monday, will draw labs again too, but I probably wont hear anything about that from them.
Will update after the appointment....
Saturday, August 16, 2014
Wednesday, August 6, 2014
Slowly Coming out of Remission-8/6/14
Chapel Hill just called me, and Jordan is slowly coming out of remission after 3 months of being in the clear. His counts are slowly dropping again, and the doctor feels we are going back into a flare up. So he is being put back on steroids (we have only been on CellCept the past two months).
His hemoglobin isn't dangerously low, but its been at 14 all summer and its now down to 12.7. Platelets have been holding strong around the 136 mark, and they are now at 43 (last week they were at 39). They also said his WBC is starting to drop (but nothing dangerously low) YET. So the doctor feels its best we put Jordan back on steroids and try to nip this in the bud before we have a repeat of this past December.
We will repeat labs next Tuesday, hopefully the steroids are doing something for him, and then the following week we see Dr. Gold.
Will update next week, please keep your thoughts and prayers for Jordan. <3
His hemoglobin isn't dangerously low, but its been at 14 all summer and its now down to 12.7. Platelets have been holding strong around the 136 mark, and they are now at 43 (last week they were at 39). They also said his WBC is starting to drop (but nothing dangerously low) YET. So the doctor feels its best we put Jordan back on steroids and try to nip this in the bud before we have a repeat of this past December.
We will repeat labs next Tuesday, hopefully the steroids are doing something for him, and then the following week we see Dr. Gold.
Will update next week, please keep your thoughts and prayers for Jordan. <3
Overdue Update-8/6/14
Didnt realize its been so long since I have updated (almost two months). Last time I updated, we were on Day three of being in the hospital with shingles. So let me backtrack and update you all....
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Jordan ended up being in the hospital for a total of nine days, which was mentally exhausting. He missed the last three days of school, and his 8th grade graduation, but luckily his homeroom teacher stopped by the house to drop off his awards that he received. Dr. Gold did not want him discharged until all the blisters had scabbed over and we knew that it was not spreading.
He received treatment everyday for the shingles, we had only one issue with his veins, and that was with the first IV that was placed...vein blew a couple of days later, had to get a vein specialist in to put another line in, once that was done, we were good with the IV.
He did receive one treatment of IVIG the day before he was discharged, because his platelets were a little low (not sure of the number), it wasn't a critical low number, but better safe than sorry is always the hematologist's motto.
Since then, its been pretty much an uneventful summer, haven't seen Dr. Gold since May. With Jordan being in the hospital in June, we missed that appointment, and never got a rescheduled one for July. But we do see him in two weeks, which we are excited about since its been three months.
I am waiting on lab results from Tuesday's lab work. Chapel Hill called me on Friday and said his platelets were very low (39 and they were at 136 on June 2nd). So we redid labs this week to see if it was a fluke or not. Keeping fingers crossed on that, or else Jordan will go back on steroids and end up hospitalized to get IVIG treatment again (ugh).
And well thats pretty much it on Jordan, will update again if anything changes.
Jordan ended up being in the hospital for a total of nine days, which was mentally exhausting. He missed the last three days of school, and his 8th grade graduation, but luckily his homeroom teacher stopped by the house to drop off his awards that he received. Dr. Gold did not want him discharged until all the blisters had scabbed over and we knew that it was not spreading.He received treatment everyday for the shingles, we had only one issue with his veins, and that was with the first IV that was placed...vein blew a couple of days later, had to get a vein specialist in to put another line in, once that was done, we were good with the IV.
He did receive one treatment of IVIG the day before he was discharged, because his platelets were a little low (not sure of the number), it wasn't a critical low number, but better safe than sorry is always the hematologist's motto.
Since then, its been pretty much an uneventful summer, haven't seen Dr. Gold since May. With Jordan being in the hospital in June, we missed that appointment, and never got a rescheduled one for July. But we do see him in two weeks, which we are excited about since its been three months.
I am waiting on lab results from Tuesday's lab work. Chapel Hill called me on Friday and said his platelets were very low (39 and they were at 136 on June 2nd). So we redid labs this week to see if it was a fluke or not. Keeping fingers crossed on that, or else Jordan will go back on steroids and end up hospitalized to get IVIG treatment again (ugh).
And well thats pretty much it on Jordan, will update again if anything changes.
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