Nurse came by today and did Jordan's PICC dressing change and drew some blood work for Dr. Gold. Just got the results in a few min's ago.
Hemoglobin is 10.5 (up from 10.1)-Normal is 13-16
Platelets are 192 (up from 119)-Normal is 145K-450K
WBC is 2.8 (up from 2.3)-Normal is 4.5-13.0
Bilirubin is 1.8 (down from 2.4)-Normal is 0.2-1.0Hematocrit 30.7 (up from 29.8)-Normal is 40-51
His Neutrophils was 62 on Saturday's lab work; unsure what they were today (hoping to get a copy of today's lab work sometime tomorrow to see); but a normal number is between 47-67, so his is right where its suppose to be now.
So looks like we have finally turned that corner, we are due for blood work again on Thursday, and with those results I should get a follow up appt for next week to Chapel; and we will go from there. But in the meantime, continue with the medications that he is on, but I guess since we are missing this week's Vincristine dose (he has had 3 so far this month), I am going to assume Dr Gold is taking him off that (thank god).
Until Thursday..have a Happy New Years!
Monday, December 30, 2013
Sunday, December 29, 2013
Weekend Update
Jordan has had a good couple of days; glad to be home. His two best friends (for almost 10 years) came over on Saturday and spent the afternoon with him, which lifted his spirits a lot, because he hasn't seen anybody but family and doctors this past month.
His coloring is good, not as flushed as he was when he came home from the hospital; but definitely still good. Of course, every little thing with him, we are overprotective with right now. But with everything we have been through this month, its understandable. Poor thing, I know he wants a vacation from us right now-LOL.
His chemo burn is healing nicely; he is on a heavy steroid cream for that, twice a day; keeping it wrapped, with a few moments of "airing out" to give him a break. Still on all his prescriptions as usual (can't wait to decrease that). He isn't sleeping that well at night, but that's to be expected due to the steroids that he is on.
Nurse came over Saturday evening to draw blood. The anticipation with the results were high; we waited and waited, and nothing. So we went to bed figuring no news was good news.
I called this morning (Sunday), and talked to an attending doctor; she said they hadn't heard anything, but that maybe the fax had been sent to the clinic (clinic is closed on the weekends); so she would walk down there and call me back after the doctors look at the results. A long 2 hrs later she finally called me back with the results:
Hemoglobin: 10.1 (up from 9.7 on Thursday)
Platelets: 119 (up from 111 on Thursday)
So good news, not much of an increase, but I will definitely take that instead of a decrease. The nurse comes over tomorrow (Monday) for more blood work, so I look forward to hearing those counts, and hopefully its also an increase. No news about going to Chapel for a followup yet, the discharge papers say we will be contacted about an appointment pending lab results; so I assume we are waiting to see how the blood work is this week. Fine by me (no offense to them, because they are great up there); but financially and mentally we need a break from traveling.
Continued prayers and thoughts of course. Hope everyone has had a great weekend!
Jordan and Brian playing a game of Monopoly (Jordan won, LOL)
His coloring is good, not as flushed as he was when he came home from the hospital; but definitely still good. Of course, every little thing with him, we are overprotective with right now. But with everything we have been through this month, its understandable. Poor thing, I know he wants a vacation from us right now-LOL.
His chemo burn is healing nicely; he is on a heavy steroid cream for that, twice a day; keeping it wrapped, with a few moments of "airing out" to give him a break. Still on all his prescriptions as usual (can't wait to decrease that). He isn't sleeping that well at night, but that's to be expected due to the steroids that he is on.
Nurse came over Saturday evening to draw blood. The anticipation with the results were high; we waited and waited, and nothing. So we went to bed figuring no news was good news.
I called this morning (Sunday), and talked to an attending doctor; she said they hadn't heard anything, but that maybe the fax had been sent to the clinic (clinic is closed on the weekends); so she would walk down there and call me back after the doctors look at the results. A long 2 hrs later she finally called me back with the results:
Hemoglobin: 10.1 (up from 9.7 on Thursday)
Platelets: 119 (up from 111 on Thursday)
So good news, not much of an increase, but I will definitely take that instead of a decrease. The nurse comes over tomorrow (Monday) for more blood work, so I look forward to hearing those counts, and hopefully its also an increase. No news about going to Chapel for a followup yet, the discharge papers say we will be contacted about an appointment pending lab results; so I assume we are waiting to see how the blood work is this week. Fine by me (no offense to them, because they are great up there); but financially and mentally we need a break from traveling.
Continued prayers and thoughts of course. Hope everyone has had a great weekend!
Jordan and Brian playing a game of Monopoly (Jordan won, LOL)
Thursday, December 26, 2013
Christmas Miracle Arrived a Day Late-But We Will Take It!
Brian just called me, he was on his way to the parking deck to get my truck; they are being discharged right now!
His counts were amazingly higher than it has been in a very long time. Hemoglobin last night was a 6.3, it is a 9.7 right now. His Platelets were 126K last night, it is at 111K right now (which is fine, that's high for Jordan). Not sure of his WBC, didn't ask, because it hasn't been a concern. They did say that his bone marrow looks to be finally reproducing his cells again, which they were very impressed with (its basically been at a standstill all month). So from the looks of it, right now, we are finally turning that corner that Dr. Gold has been waiting for us to turn.
Jordan will have a nurse come in three times a week (Saturdays, Mondays, & Thursdays) for bloodwork and PICC line dressing changes (PICC line dressing change is done once a week). No appointment to go to Chapel Hill next week, unless his counts drop again. They told Brian, no offense, but we hope not to see you for a few weeks. Just keeping prayers and thoughts that his counts stabilize and continue to rise to a healthy number, so we can go back to our normal family life.
I sure hope this means a good start to 2014; we have a lot to be thankful for.
His counts were amazingly higher than it has been in a very long time. Hemoglobin last night was a 6.3, it is a 9.7 right now. His Platelets were 126K last night, it is at 111K right now (which is fine, that's high for Jordan). Not sure of his WBC, didn't ask, because it hasn't been a concern. They did say that his bone marrow looks to be finally reproducing his cells again, which they were very impressed with (its basically been at a standstill all month). So from the looks of it, right now, we are finally turning that corner that Dr. Gold has been waiting for us to turn.
Jordan will have a nurse come in three times a week (Saturdays, Mondays, & Thursdays) for bloodwork and PICC line dressing changes (PICC line dressing change is done once a week). No appointment to go to Chapel Hill next week, unless his counts drop again. They told Brian, no offense, but we hope not to see you for a few weeks. Just keeping prayers and thoughts that his counts stabilize and continue to rise to a healthy number, so we can go back to our normal family life.
I sure hope this means a good start to 2014; we have a lot to be thankful for.
12/26/13-9:30AM Update
9:30AM-Brian said they were kicking him out of Jordan's room for an hour, they were getting ready to give him a breathing medicine (ventilator) to help prevent pneumonia (because of all these meds he has been on, suppressed immune system, etc). They did do the blood transfusion around 5 or so this morning, that has since finished up; haven't drawn labs yet, but I am assuming they will do that during Jordan's breathing treatment. So hopefully we hear something around noon about those counts; praying and keeping my fingers crossed they are up, so I can have my boys home tonight! I miss them very dearly.
Wednesday, December 25, 2013
Christmas Miracle Not Happening
Its been a pretty uneventful day; day was spent with Jordan receiving IVIG all day (high dosage of that). They finished that up around 7PM or so (the bottle of IVIG was giving them problems, so it ran over longer than it was suppose to). They ran a CBC on Jordan around 8PM, Brian got those results around 10PM; Hemoglobin has decreased again from 6.6 this morning, now to 6.3; hasn't decreased by much, but considering his Hemoglobin was at 5.8 when Brian went up there with him, Monday night...it looks like more blood transfusions are in Jordan's future for tomorrow; which means him not coming home (unless we get a Christmas miracle in the morning). His platelet count has increased (but thats not anything we have been worried about at all during this entire ordeal), but that is at 126K. WBC is at 1.5, which is not surprising, since his Hemoglobin is low.
They just finished up around round of steroids, doing his Vincristine now (which takes like 5 mins), and they will pretty much leave him alone for the rest of the night (other than the routine vital checks every few hours). Brian said they are going to do another CBC at 9AM, so we should know more by noon tomorrow, on what is going to happen (either more treatment or being discharged).
Please keep fingers/toes crossed and continuous prayers that we get a higher Hemoglobin number tomorrow, so my boys can come home, and we can have a good weekend at home. =)
1AM Update: They are going to go ahead with the blood transfusions tonight; hope to be done by 7AM, CBC around 8-9AM; hopefully that comes back with higher numbers so they can be discharged. Next update at noon tomorrow!
Santa visited Jordan in the hospital
They just finished up around round of steroids, doing his Vincristine now (which takes like 5 mins), and they will pretty much leave him alone for the rest of the night (other than the routine vital checks every few hours). Brian said they are going to do another CBC at 9AM, so we should know more by noon tomorrow, on what is going to happen (either more treatment or being discharged).
Please keep fingers/toes crossed and continuous prayers that we get a higher Hemoglobin number tomorrow, so my boys can come home, and we can have a good weekend at home. =)
1AM Update: They are going to go ahead with the blood transfusions tonight; hope to be done by 7AM, CBC around 8-9AM; hopefully that comes back with higher numbers so they can be discharged. Next update at noon tomorrow!
Santa visited Jordan in the hospital
10AM Christmas Day Update
10AM Update: They want to run a 12-14 hour drip for his IVIG, because of the higher dosage; they can run it faster, but the possibility with side effects increase (headaches, nausea, etc-although they are going to give him meds for that before they start, just incase). So its not set in stone yet on him coming home tonight; I am uncomfortable running a faster drip, so we are still waiting to see on a decision. Jordan really wants to come home badly, even if its to sleep in his own bed for one night; but they haven't even started the treatment yet, because they are figuring out how slow/fast to do it. So the possibility of them being home tomorrow, instead of tonight, is probably very likely.
However, on the bright side, he looks a lot better than he did on Monday.
However, on the bright side, he looks a lot better than he did on Monday.
Merry Christmas
Merry Christmas from The Jackson Family!
Update on Jordan, his Hemoglobin is still low (6.6), but its holding stable, he has not received any blood transfusions since Monday night, and his Hemoglobin hasn't dipped at all (he has been on a very heavy dose of steroids the past two nights and received IVIG yesterday morning). Platelets are also holding steady at 99K. They are going to up his dosage for IVIG and give that to him today at some point. Dr. Gold thinks we are about to finally get over the hurdle that we have been striving for. Says Jordan looks REALLY GOOD right now. He has also given us the option for them to either come home tonight, after treatment; or wait until tomorrow. I think the decision we made, is for Brian & Jordan to try and come home tonight; and we will get a nurse to come here tomorrow, and do another CBC to see if his counts are still holding. Of course if counts have dropped, I will be making the trip back to Chapel Hill with him this time. But fingers and toes crossed, that Dr. Gold is right, and we are finally getting his immune system stabilized, to where we don't have to make these trips every other day like we have been.
Update on Jordan, his Hemoglobin is still low (6.6), but its holding stable, he has not received any blood transfusions since Monday night, and his Hemoglobin hasn't dipped at all (he has been on a very heavy dose of steroids the past two nights and received IVIG yesterday morning). Platelets are also holding steady at 99K. They are going to up his dosage for IVIG and give that to him today at some point. Dr. Gold thinks we are about to finally get over the hurdle that we have been striving for. Says Jordan looks REALLY GOOD right now. He has also given us the option for them to either come home tonight, after treatment; or wait until tomorrow. I think the decision we made, is for Brian & Jordan to try and come home tonight; and we will get a nurse to come here tomorrow, and do another CBC to see if his counts are still holding. Of course if counts have dropped, I will be making the trip back to Chapel Hill with him this time. But fingers and toes crossed, that Dr. Gold is right, and we are finally getting his immune system stabilized, to where we don't have to make these trips every other day like we have been.
Tuesday, December 24, 2013
Christmas Eve Update
Labs came back, his hemoglobin is up to 6.8, and his platelets are at 96,000. Nurse is waiting on the orders to see if he needs another blood transfusion; which more than likely is a yes; for tonight.
Sweetest thing Dr. Gold did though, for Jordan. He came in with a Christmas tree as a gift; and Jordan also received a iPod Nano and a $25 iTunes gift card. Brian said it put a smile on his face.
Sweetest thing Dr. Gold did though, for Jordan. He came in with a Christmas tree as a gift; and Jordan also received a iPod Nano and a $25 iTunes gift card. Brian said it put a smile on his face.
Christmas Eve Night
Last update for the night, they have started his second round of steroids tonight, and upped the dosage to 1300mg, which is crazy to me (he was on 120mg a day here at home). They are trying to hit his system hard, so it will stop working against him, I sure hope it works.
They will run some bloodwork at 4AM, Brian says; and that will tell us what the plan is for the rest of the day. If they are higher than what earlier todays was (Hemoglobin 6.8 and Platelets 96K), then they will give him one more round of IVIG (takes about 5 hrs), draw bloodwork one more time to check counts, give him his third dose of Vincristine, and discharge him to come home (then do a CBC either Friday or Monday again, and go from there); which would put them at home by 4-5PM; which is fine, I will have Christmas dinner done and ready for them, so we can enjoy it as a family, then Jordan can open up his gifts. If counts are still low, then more than likely they will do two more units of blood, IVIG, and then Vincristine. Which means they would not be coming home for Christmas at all, because doing two units of blood takes 4 hrs, and then they would have to start the IVIG, which takes another 5 hrs. So if they were to start at 7AM as they said they wanted to, they wouldn't be done until 5-6PM, then they would have to draw blood to recheck his counts, and it would be after 6PM before they got discharged, depending on the blood work results from that, and that would put them home around 9:30PM. Sigh.
Having a real hard time, I have no family here (been estranged from my immediate family for over 5 years-other than my brother, who I see once every few months). Its Christmas, so the close friends that I do have, are with their families as they should be. No support system really, Brian is my support system..my best friend, and he is with Jordan (again, as he should be). So I feel completely alone, and have to keep myself from breaking down in front of my kids (although I did have a good cry tonight once they went to bed).
It was really tough putting on a smile this evening, and going through the motions with Conner (our 9 year old who still believes in Santa). Baking cookies, making reindeer food, watching Christmas movies (Frosty and Rudolph), putting out the milk & cookies for Santa, leaving out the reindeer food in the yard for Santa's reindeers.
He went to bed around 9PM, I had Brittany help me bring down his big Santa gift (air hockey table); she went to bed shortly after 10PM (not sure if she is asleep yet-its past 11PM now). And I am just sitting here...alone, in my house, complete silence around, trying to enjoy a glass of wine. I still have to set up the rest of Santa for the kids (even Jordan, although he isn't here); and I am struggling to find the willpower to go upstairs, get everything down here, and put that up for my kids that are here.
If this is a test from God, I sure hope I am passing with flying colors, because I definitely would like to be finished with this test now, and go back to our normal routine life. As a mother, you want to do everything in your power to make your child feel better, and I feel absolutely helpless that I can't do anything for him. I only hope and pray that when he does go into remission, that this makes all of us a stronger family, especially him; because its been very overwhelming and frustrating for not only us, but him also. I am thankful, however, that this has not strained my marriage at all, it has only brought Brian and I closer together (if that is even possible, because we are very close already). So for that, I am grateful.....
Merry Christmas everyone, I do hope you all have a wonderful time with your family, and your children. Please keep your thoughts and prayers with my family as we continue this journey with Jordan. <3
They will run some bloodwork at 4AM, Brian says; and that will tell us what the plan is for the rest of the day. If they are higher than what earlier todays was (Hemoglobin 6.8 and Platelets 96K), then they will give him one more round of IVIG (takes about 5 hrs), draw bloodwork one more time to check counts, give him his third dose of Vincristine, and discharge him to come home (then do a CBC either Friday or Monday again, and go from there); which would put them at home by 4-5PM; which is fine, I will have Christmas dinner done and ready for them, so we can enjoy it as a family, then Jordan can open up his gifts. If counts are still low, then more than likely they will do two more units of blood, IVIG, and then Vincristine. Which means they would not be coming home for Christmas at all, because doing two units of blood takes 4 hrs, and then they would have to start the IVIG, which takes another 5 hrs. So if they were to start at 7AM as they said they wanted to, they wouldn't be done until 5-6PM, then they would have to draw blood to recheck his counts, and it would be after 6PM before they got discharged, depending on the blood work results from that, and that would put them home around 9:30PM. Sigh.
Having a real hard time, I have no family here (been estranged from my immediate family for over 5 years-other than my brother, who I see once every few months). Its Christmas, so the close friends that I do have, are with their families as they should be. No support system really, Brian is my support system..my best friend, and he is with Jordan (again, as he should be). So I feel completely alone, and have to keep myself from breaking down in front of my kids (although I did have a good cry tonight once they went to bed).
It was really tough putting on a smile this evening, and going through the motions with Conner (our 9 year old who still believes in Santa). Baking cookies, making reindeer food, watching Christmas movies (Frosty and Rudolph), putting out the milk & cookies for Santa, leaving out the reindeer food in the yard for Santa's reindeers.
He went to bed around 9PM, I had Brittany help me bring down his big Santa gift (air hockey table); she went to bed shortly after 10PM (not sure if she is asleep yet-its past 11PM now). And I am just sitting here...alone, in my house, complete silence around, trying to enjoy a glass of wine. I still have to set up the rest of Santa for the kids (even Jordan, although he isn't here); and I am struggling to find the willpower to go upstairs, get everything down here, and put that up for my kids that are here.
If this is a test from God, I sure hope I am passing with flying colors, because I definitely would like to be finished with this test now, and go back to our normal routine life. As a mother, you want to do everything in your power to make your child feel better, and I feel absolutely helpless that I can't do anything for him. I only hope and pray that when he does go into remission, that this makes all of us a stronger family, especially him; because its been very overwhelming and frustrating for not only us, but him also. I am thankful, however, that this has not strained my marriage at all, it has only brought Brian and I closer together (if that is even possible, because we are very close already). So for that, I am grateful.....
Merry Christmas everyone, I do hope you all have a wonderful time with your family, and your children. Please keep your thoughts and prayers with my family as we continue this journey with Jordan. <3
Monday, December 23, 2013
December 23rd 2013 Update
The doctor has given Jordan a private nurse that will come in weekly to do PICC line dressing changes and if needed, any blood work. Met her today, and much to my surprise, we went to school together (grew up together); so it was a relief that someone that I personally know, is caring for my son.
We had an uneventful weekend; but I could tell Jordan's counts were dropping. Which I was expecting, because the doctor now has him on a medication called CellCept (which is a medication they give to organ transplant patients). He laid around a lot, napped, his coloring would change from pale, to "ehh okay". Brian was able to take him out for about 2 hours on Sunday, to meet up with some friends for football and wings. That tired him out a little, but he was glad to get out of the house for a couple of hours. Also decorated a gingerbread house with the kids; so it was a laid back weekend.
Monday afternoon, his nurse came in; checked him over, did his vitals, took some bloodwork. The original plan was that if Jordan's counts were low, we were going to go into our local hospital to receive a couple of units of blood, and then drive up to Chapel Hill on Thursday for our appointment. Plans changed real fast. His Hemoglobin was 4.8 and his platelet count was 69,000 (normal count is 150,000-450,000). So they tried to call our local hospital to get us set up there, but our hospital did not have the resources that Jordan needed for treatment. So my husband and Jordan left late last night and headed to Chapel Hill to receive treatment.
They get settled in around 10-11PM last night, and went ahead and started him on his blood transfusions. They also gave him a large dose of steroids. This morning, they started him on his IVIG treatment. They are going to closely monitor him throughout the day. Tomorrow morning, they will give him another dose of IVIG; they are wanting to treat this very aggressively; because his body is just eating up the blood transfusions they are giving him. The doctors are basically scratching their heads at Jordan's symptoms, because all of the bloodwork has came back negative. They cannot figure out what triggered this flare up. He hasn't been sick, he has no infections or viruses in his body; so they are just puzzled right now.
If all goes well, my husband and Jordan should be home later on in the day tomorrow. So yes, we will not be together for Christmas Eve, nor together Christmas morning. I am at home, with our other two kids. One, who is 15 and would understand if we needed to put Christmas on hold. But I have a 9 year old, that has been counting down the days, still believes in Santa, and wouldn't understand the concept of waiting.
But, as much as it sucks; if this gets Jordan better, that is the ultimate goal.
We had an uneventful weekend; but I could tell Jordan's counts were dropping. Which I was expecting, because the doctor now has him on a medication called CellCept (which is a medication they give to organ transplant patients). He laid around a lot, napped, his coloring would change from pale, to "ehh okay". Brian was able to take him out for about 2 hours on Sunday, to meet up with some friends for football and wings. That tired him out a little, but he was glad to get out of the house for a couple of hours. Also decorated a gingerbread house with the kids; so it was a laid back weekend.
Monday afternoon, his nurse came in; checked him over, did his vitals, took some bloodwork. The original plan was that if Jordan's counts were low, we were going to go into our local hospital to receive a couple of units of blood, and then drive up to Chapel Hill on Thursday for our appointment. Plans changed real fast. His Hemoglobin was 4.8 and his platelet count was 69,000 (normal count is 150,000-450,000). So they tried to call our local hospital to get us set up there, but our hospital did not have the resources that Jordan needed for treatment. So my husband and Jordan left late last night and headed to Chapel Hill to receive treatment.
They get settled in around 10-11PM last night, and went ahead and started him on his blood transfusions. They also gave him a large dose of steroids. This morning, they started him on his IVIG treatment. They are going to closely monitor him throughout the day. Tomorrow morning, they will give him another dose of IVIG; they are wanting to treat this very aggressively; because his body is just eating up the blood transfusions they are giving him. The doctors are basically scratching their heads at Jordan's symptoms, because all of the bloodwork has came back negative. They cannot figure out what triggered this flare up. He hasn't been sick, he has no infections or viruses in his body; so they are just puzzled right now.
If all goes well, my husband and Jordan should be home later on in the day tomorrow. So yes, we will not be together for Christmas Eve, nor together Christmas morning. I am at home, with our other two kids. One, who is 15 and would understand if we needed to put Christmas on hold. But I have a 9 year old, that has been counting down the days, still believes in Santa, and wouldn't understand the concept of waiting.
But, as much as it sucks; if this gets Jordan better, that is the ultimate goal.
Sunday, December 22, 2013
Beginning of a New Journey
I am starting this late, don't know why I didn't start this when Jordan was first diagnosed with ITP when he was 6. Told myself time and time again to get started on telling the story of his journey with having ITP (and now Evans Syndrome/ALPS). I figure this is an easier way to keep everyone updated about what is going on with him, especially since not all friends/family are on Facebook (which is where I have been updating everyone on).
Let me give a brief summary of what has been going on with Jordan the past 6+ years, for those that are not close to us. When he was 6 years old, he was diagnosed with ITP (Idiopathic thrombocytopenic purpura); which in English terms means his immune system was fighting off his platelets as foreign objects. We didn't have many flare ups the past 7 years, maybe once or twice a year, it would last for maybe a month or two, and things went back to normal.
Fast forward to the beginning of this month....
On December 2nd, a Monday, Jordan called me from school, complaining of a headache, not feeling well, could I pick him up. So I did, I figured he was fighting off the same thing I was (sinus cold). He came home, took a shower, got something to eat, and then went and watched TV in my bedroom, where he fell asleep. Monday night, the headache was almost a migraine for him; we had the lights off in the house, tried not to disturb him; gave him Tylenol every 6 hours (because with having ITP, he cannot have any NSAIDS). Tylenol was doing nothing for his headache. I told him to go to bed, and try to sleep.
December 3rd, the next day; went to get the kids up for school, checked on him; still complaining of a headache, but it was a dull one now. I decided to keep him home, and let him sleep it off, in hopes to get him back to school the following day. Checked on him throughout the day, giving him Tylenol every 6 hrs, making sure he had water, etc. Still that lingering headache that wouldn't go away (which I understood, because I had been fighting one for many days).
BTW, speaking to him now, he has NO memory of anything since he went to bed, after I picked him up from school on December 2nd 2013; he remembers going to bed after he came home from school, and images here and there in the hospital, but his memory does not return until he comes out of the PICU into a normal room on December 8th.
December 4th, Wednesday. Did my routine of waking up the kids for school, checked on Jordan; he was awake, laying in bed, but still complained about the headache. So I got him some water, Tylenol; and told him I would let him stay home one more day, if he was not better by Thursday, I was taking him to the doctor. I took my kids to school, and call it Mothers Instinct or what, but something told me that something was not right; that he needed to go to the hospital, it couldn't wait.
So I get home, and tell Jordan I am taking him to the ER, because something was not right. He argued with me about going, but I stood firm and said lets get ready and go. It took me almost 2 hrs to get him out of the house (I now know I should have called 911 and had the ambulance take him in-but I didn't realize how bad he was, until we arrived at the hospital).
Thinking back now, he was confused, wasn't responding to my simple commands of (put your jeans, socks, and shoes on); he was very jaundice by this point, and some massive bruises on his body (some I didnt even know about until he was in the ER and they were looking him over).
We get to the hospital, and he couldn't even walk at this point (whereas just 30 mins ago, he could walk), so I had to grab a wheelchair and help him into it. Get into the ER, and within 5 mins they whisk him away; because he could barely sit in the wheelchair. Hooked him up to the monitors, and his heartrate was elevated to 147, and his blood pressure was low (he was in respiratory failure at this point). They did a CT scan and an XRAY...XRAY came back okay, but the CT scan showed he had brain swelling, and a few small spots on his brain, showing possibly old brain bleeds. They advised us that Jordan needed to be transported to Chapel Hill Hospital (we live 2½ hrs away from there). Jordan was in and out, he didn't recognize me at first; they told us they were going to sedate him and place him on a breathing machine, to help him breath, because he was having a hard time.
So between December 4th to December 11th, he was in the hospital up in Chapel Hill; within a day he was off the breathing machine, but was on a lot of medications through his IV; received countless numbers of blood transfusions and IVIG treatment. Each day, he felt better and better (although his red blood cells were low); and eventually was diagnosed withEvans Syndrome. Which in English terms, his immune system is now not only fighting off his platelets, its now fighting off his red blood cells.
He was discharged on December 11th, with a RBC of 8.2; and we scheduled a follow up appt for the following week, back in Chapel Hill. They sent us home with a lot of prescriptions (including Prednisone); and he also received a dose ofVincristine (a chemo treatment) before we left.
December 18th-My husband and I drove the 2½ hr drive up to Chapel Hill. They had trouble getting an IV in (veins were basically weak, kept rolling); so they put in a PICC line to give him some relief. His counts were low (RBC was at 6.2), so we were informed that we needed to come back the following day to receive 2 units of blood. He received his second dose of Vincristine before we left that Wednesday. The doctor also advised us that they are pretty certain he also has ALPS (still waiting for confirmation on that test results, but they are 100% sure he also has that on top of Evans Syndrome)
December 19th-Jordan and I made the trip back to Chapel Hill, it was a pretty uneventful; his RBC had dropped more to a 5; he receive two units of blood; and we came home with plans to run another CBC on Monday, and had an appointment scheduled for the following Thursday.
Let me give a brief summary of what has been going on with Jordan the past 6+ years, for those that are not close to us. When he was 6 years old, he was diagnosed with ITP (Idiopathic thrombocytopenic purpura); which in English terms means his immune system was fighting off his platelets as foreign objects. We didn't have many flare ups the past 7 years, maybe once or twice a year, it would last for maybe a month or two, and things went back to normal.
Fast forward to the beginning of this month....
On December 2nd, a Monday, Jordan called me from school, complaining of a headache, not feeling well, could I pick him up. So I did, I figured he was fighting off the same thing I was (sinus cold). He came home, took a shower, got something to eat, and then went and watched TV in my bedroom, where he fell asleep. Monday night, the headache was almost a migraine for him; we had the lights off in the house, tried not to disturb him; gave him Tylenol every 6 hours (because with having ITP, he cannot have any NSAIDS). Tylenol was doing nothing for his headache. I told him to go to bed, and try to sleep.
December 3rd, the next day; went to get the kids up for school, checked on him; still complaining of a headache, but it was a dull one now. I decided to keep him home, and let him sleep it off, in hopes to get him back to school the following day. Checked on him throughout the day, giving him Tylenol every 6 hrs, making sure he had water, etc. Still that lingering headache that wouldn't go away (which I understood, because I had been fighting one for many days).
BTW, speaking to him now, he has NO memory of anything since he went to bed, after I picked him up from school on December 2nd 2013; he remembers going to bed after he came home from school, and images here and there in the hospital, but his memory does not return until he comes out of the PICU into a normal room on December 8th.
December 4th, Wednesday. Did my routine of waking up the kids for school, checked on Jordan; he was awake, laying in bed, but still complained about the headache. So I got him some water, Tylenol; and told him I would let him stay home one more day, if he was not better by Thursday, I was taking him to the doctor. I took my kids to school, and call it Mothers Instinct or what, but something told me that something was not right; that he needed to go to the hospital, it couldn't wait.
So I get home, and tell Jordan I am taking him to the ER, because something was not right. He argued with me about going, but I stood firm and said lets get ready and go. It took me almost 2 hrs to get him out of the house (I now know I should have called 911 and had the ambulance take him in-but I didn't realize how bad he was, until we arrived at the hospital).
Thinking back now, he was confused, wasn't responding to my simple commands of (put your jeans, socks, and shoes on); he was very jaundice by this point, and some massive bruises on his body (some I didnt even know about until he was in the ER and they were looking him over).
We get to the hospital, and he couldn't even walk at this point (whereas just 30 mins ago, he could walk), so I had to grab a wheelchair and help him into it. Get into the ER, and within 5 mins they whisk him away; because he could barely sit in the wheelchair. Hooked him up to the monitors, and his heartrate was elevated to 147, and his blood pressure was low (he was in respiratory failure at this point). They did a CT scan and an XRAY...XRAY came back okay, but the CT scan showed he had brain swelling, and a few small spots on his brain, showing possibly old brain bleeds. They advised us that Jordan needed to be transported to Chapel Hill Hospital (we live 2½ hrs away from there). Jordan was in and out, he didn't recognize me at first; they told us they were going to sedate him and place him on a breathing machine, to help him breath, because he was having a hard time.
So between December 4th to December 11th, he was in the hospital up in Chapel Hill; within a day he was off the breathing machine, but was on a lot of medications through his IV; received countless numbers of blood transfusions and IVIG treatment. Each day, he felt better and better (although his red blood cells were low); and eventually was diagnosed withEvans Syndrome. Which in English terms, his immune system is now not only fighting off his platelets, its now fighting off his red blood cells.
He was discharged on December 11th, with a RBC of 8.2; and we scheduled a follow up appt for the following week, back in Chapel Hill. They sent us home with a lot of prescriptions (including Prednisone); and he also received a dose ofVincristine (a chemo treatment) before we left.
December 18th-My husband and I drove the 2½ hr drive up to Chapel Hill. They had trouble getting an IV in (veins were basically weak, kept rolling); so they put in a PICC line to give him some relief. His counts were low (RBC was at 6.2), so we were informed that we needed to come back the following day to receive 2 units of blood. He received his second dose of Vincristine before we left that Wednesday. The doctor also advised us that they are pretty certain he also has ALPS (still waiting for confirmation on that test results, but they are 100% sure he also has that on top of Evans Syndrome)
December 19th-Jordan and I made the trip back to Chapel Hill, it was a pretty uneventful; his RBC had dropped more to a 5; he receive two units of blood; and we came home with plans to run another CBC on Monday, and had an appointment scheduled for the following Thursday.
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