Never did hear from the doctor last week, normally I hear from them on Wednesday's, so if I haven't heard from them by tomorrow evening, I will call Thursday morning and see what is going on with everything.
We need to decrease steroids again, because (thanks to his nurse for sending me the lab report) he is still in stable condition, numbers are still slowly climbing (not as high as I would like, but we will still take it, as long as there is no decrease); he has been on the steroids for over 2 months now, I would like to have him off of them sooner rather than later.
I also need an appointment date for March, since they canceled our appointment this month; we need/want the PICC removed, its just no longer needed. Granted we are still doing blood draws weekly (and I am hoping to move to monthly here shortly), but the whole purpose of the PICC line was because he was having blood drawn every single day (multiple times a day), and his veins couldn't handle it anymore; they have since healed. Plus with us going on vacation mid April to TN, we just don't want to have to deal with it either, I want him to have a great time, in a normal setting, not having to worry about the PICC being in place. So with him being in stable condition, we would like it removed. I am even willing to make a trip to Chapel next week to do it, thats how bad we want to be done with it.
Anyhow, here are this week's counts, compared to last week's counts. No big change, but we are happy with it.
WBC: 4.7 (was 5.3 last week) still in normal range
RBC: 4.7 (was 4.6 last week) still in normal range
Hemoglobin: 12.7 (was 12.5 last week) almost to normal range
Platelets: 206 (was 226 last week) still in normal range
Neutrophils: 68 (was 74 last week) last week was a little high, but this week is in normal range
Retic: 1.2 (was 1.1 last week) still in normal range
Bilirubin: 0.4 (was 0.6 last week) still in normal range
Jordan is doing good, his face has broken out a bit, not sure if its just from being a teenager, or its something he is allergic to. We dont have the allergist appointment until the end of April up in Chapel Hill, so we will see on that. Doesn't seem to be bothering him at all. Otherwise he looks and feels great, ready to get back into his normal routine again. I only pray that his counts stay up for awhile, I know with this blood disorder, he can be fine for a few months and then everything goes back to square one again; so I am hoping for a lengthy period of time for the rest of this year, so he can enjoy his summer, and the start of high school in the fall.
Will update this post once I hear from his doctor about what the next course of action is.
They just called me from Chapel Hill, we are decreasing his steroids to 66mg a day (we were at 78mg); so we are getting there. Told her we needed a refill for CellCept, and I need an appointment date for March, because of the issues with the PICC; so she told me she would talk to Dr. Gold and give me a call later on in the week with the new appointment date. If I haven't heard from anyone by Thursday night, I will call Friday morning to reconfirm that I need an appointment date.
Tuesday, February 25, 2014
Tuesday, February 18, 2014
Quick Weekly Update-2/18/14
I haven't heard from the doctor yet, to see if we are decreasing his steroids this week, but got yesterday's test results from Jordan's nurse in email earlier this morning. Everything still looks good, slow and steady his counts are creeping higher.
WBC-5.3 (was 5.9)
RBC-4.6
Hemoglobin-12.5 (was 12.4)
Platelets-226 (was 209)
Neutrophils-74
Retic-1.1
Bilirubin-0.6
We were suppose to have a doctor appointment with his hematologist yesterday, but they called me on Thursday to cancel. Chapel Hill, Raleigh, and that area got hit with some bad weather last week (as we did, we got an ice storm, they got that plus snow). We were disappointed with the cancellation, because we were hoping to have Jordan's PICC line removed, but we understand, and hopefully that appointment will be rescheduled in a couple of weeks.
We did get his Pentamidine treatment yesterday afternoon (he gets this breathing treatment once a month to prevent pneumonia since his immune system is compromised, plus its because of all the treatment he has received, including medication).
I will update this post once I hear from the doctor on what our course of action is for this week as far as decreasing medication and/or just staying on the same course.
Our nightly routine (med wise, is twice a day).
WBC-5.3 (was 5.9)
RBC-4.6
Hemoglobin-12.5 (was 12.4)
Platelets-226 (was 209)
Neutrophils-74
Retic-1.1
Bilirubin-0.6
We were suppose to have a doctor appointment with his hematologist yesterday, but they called me on Thursday to cancel. Chapel Hill, Raleigh, and that area got hit with some bad weather last week (as we did, we got an ice storm, they got that plus snow). We were disappointed with the cancellation, because we were hoping to have Jordan's PICC line removed, but we understand, and hopefully that appointment will be rescheduled in a couple of weeks.
We did get his Pentamidine treatment yesterday afternoon (he gets this breathing treatment once a month to prevent pneumonia since his immune system is compromised, plus its because of all the treatment he has received, including medication).
I will update this post once I hear from the doctor on what our course of action is for this week as far as decreasing medication and/or just staying on the same course.
Our nightly routine (med wise, is twice a day).
Tuesday, February 11, 2014
Quick Weekly Update-2/11/14
Hemoglobin is 12.4 (was 12)
Platelets: 209 (was 195)
WBC: 5.9 (was 4.2)
So everything else is in normal range for a boy his age; Hemoglobin is not there yet, but another 1-2 higher and we will be good. Decreased his steroids from 85mg to 78mg; so hopefully no bad reactions, I am getting nervous as the steroids get lower because his emotions start going everywhere due to weaning. We had that moment this afternoon during PICC dressing change, but I don't blame the steroids on that, just him wanting to be done with all this crap & being frustrated (imagine tearing off a HUGE band-aid SLOWLY, while you have to keep whatever is in your arm INTACT and it can't move....yeah, its not the most comfortable thing to have done-the dressing change-nor is being the person doing the dressing change), and go back to some sort of normalcy until his next flare up (please lord give us longer than a few months to be in remission before the next flare).
When they called me tonight with the blood count results, I asked if his PICC could be taken out next Monday (when we see Dr. Gold for our checkup); she said she sees no problem with that, she can remove it right in the clinic room, but lets see what Dr. Gold says, said she doesn't think he will have a problem removing it, since Jordan has been in stable condition the past two months. So keep your fingers crossed! This does not mean the blood-work will stop, just means he will have to get poked just like everyone else; but he said he was fine with that, and his veins have healed finally.
Nothing else to really report on...did have a TINY scare last week, when I went to do his flush, there was some light pink blood that had drained down to his clamp line; it did this for two days (not bad, just a tiny bit, but enough to alarm me). I just flushed with some extra Hemp and he was good to go. Bad stomach bug going around here, thankfully Jordan has not gotten it yet, and keeping fingers crossed it stays that way.
Appointment with Dr. Gold is next Monday, Jordan will also get his monthly breathing treatment. Lets hope everything continues to improve and we get that PICC line removed!
Platelets: 209 (was 195)
WBC: 5.9 (was 4.2)
So everything else is in normal range for a boy his age; Hemoglobin is not there yet, but another 1-2 higher and we will be good. Decreased his steroids from 85mg to 78mg; so hopefully no bad reactions, I am getting nervous as the steroids get lower because his emotions start going everywhere due to weaning. We had that moment this afternoon during PICC dressing change, but I don't blame the steroids on that, just him wanting to be done with all this crap & being frustrated (imagine tearing off a HUGE band-aid SLOWLY, while you have to keep whatever is in your arm INTACT and it can't move....yeah, its not the most comfortable thing to have done-the dressing change-nor is being the person doing the dressing change), and go back to some sort of normalcy until his next flare up (please lord give us longer than a few months to be in remission before the next flare).
When they called me tonight with the blood count results, I asked if his PICC could be taken out next Monday (when we see Dr. Gold for our checkup); she said she sees no problem with that, she can remove it right in the clinic room, but lets see what Dr. Gold says, said she doesn't think he will have a problem removing it, since Jordan has been in stable condition the past two months. So keep your fingers crossed! This does not mean the blood-work will stop, just means he will have to get poked just like everyone else; but he said he was fine with that, and his veins have healed finally.
Nothing else to really report on...did have a TINY scare last week, when I went to do his flush, there was some light pink blood that had drained down to his clamp line; it did this for two days (not bad, just a tiny bit, but enough to alarm me). I just flushed with some extra Hemp and he was good to go. Bad stomach bug going around here, thankfully Jordan has not gotten it yet, and keeping fingers crossed it stays that way.
Appointment with Dr. Gold is next Monday, Jordan will also get his monthly breathing treatment. Lets hope everything continues to improve and we get that PICC line removed!
Tuesday, February 4, 2014
Quick Weekly Update-2/4/14
Jordan's doctor called me a couple of hours ago, everything looks great:
Hemoglobin: 12 (up from 11)
Platelets: 195 (same from last week)
WBC: 4.2 (up from 4.1)
So he has OFFICIALLY been placed in stable condition (they wanted at least a month's worth of results, before placing him in this area). We are NOT decreasing his steroids this week, will see how the lab results are next week, and will decrease again. Right now he is on 85mg of Prednisolone a day (along with his other med's, including 750mg of CellCept). In two weeks we see his doctor again, and Jordan is going to request for his PICC line to be removed; he told me last night, his veins have healed, he can stand being poked once a week again, with a needle. So hopefully having that removed will be an easy task, and not something we need to travel to Chapel Hill for.
We let Jordan stay at his best friend's house all weekend, they were our old neighbors (no pun intended LOL) for 8 years; so they have been basically on this journey with us, since they are like a second family to Jordan. Been best friends for 10+ years; he came home for a short moment Saturday night, so I could do his flush, but other than that, took his meds with him and had a ball. He definitely needed to be out of the house, he has been stuck with us for the past 2 months.
Until next week =)
Hemoglobin: 12 (up from 11)
Platelets: 195 (same from last week)
WBC: 4.2 (up from 4.1)
So he has OFFICIALLY been placed in stable condition (they wanted at least a month's worth of results, before placing him in this area). We are NOT decreasing his steroids this week, will see how the lab results are next week, and will decrease again. Right now he is on 85mg of Prednisolone a day (along with his other med's, including 750mg of CellCept). In two weeks we see his doctor again, and Jordan is going to request for his PICC line to be removed; he told me last night, his veins have healed, he can stand being poked once a week again, with a needle. So hopefully having that removed will be an easy task, and not something we need to travel to Chapel Hill for.
We let Jordan stay at his best friend's house all weekend, they were our old neighbors (no pun intended LOL) for 8 years; so they have been basically on this journey with us, since they are like a second family to Jordan. Been best friends for 10+ years; he came home for a short moment Saturday night, so I could do his flush, but other than that, took his meds with him and had a ball. He definitely needed to be out of the house, he has been stuck with us for the past 2 months.
Until next week =)
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