Labs this morning.
Dr Appt this afternoon.
EBV results wont be back for 3-4 days.
Jada Rose is running at 3/4 impulse power.
But still laughs and jokes at any opportunity.
We will update after meeting with Dr. Book this afternoon.
Thursday, June 19, 2008
Tuesday, June 17, 2008
Some comforting research...
As I have been reading anything I can find about EBV today I have noticed there are many many transplant patients who are EBV positive. For the most part their success comes from anti-biotic and lowering prograf. Therefore, I am just going to leave it at that for now! Apparently EBV can live in the tonsils so having tonsils taken out might even help? I dunno. It appears that my initial scale below is perhaps a little too steep. After spending time on LiverFamilies.org and reading about others battles with EBV early detection is KEY! We have early detection...I hope. So hopefully it is enough to give us the key to success I have been reading about the last few hours. The reality of that scale is likely wrong in Jada's case. I'll hope and pray that it is.
The Plan (for now)
Basically the most disturbing thing about EBV is that it can turn into (cause) a nasty cancer called PTLD. Look up PTLD online if you want to get depressed 58% of kids who get it don't live. The crappy thing is its difficult to detect. They will watch her labs closely. One sign of the "looming danger" of PTLD is the EBV count. Now from what I have read with other cases of transplant patients, this is the scale that seems to fit. This scale is in no way official but rather the pulse I get from others when their kids are being monitored with EBV.
EBV value = PTLD Danger
50-400 = Kind of scary but constant monitoring is needed
400-1000 = High alert
1000-4000 = Scary High Alert
4000-6000 = Dark Clouds are on the horizon
6000-20,000 PTLD is next to eminent
Jada Rose is at 6000
I put 20,000 out there because the Liver Clinic said they have kids who reach this level and that is when it gets stormy. Now as I stated above PTLD is diagnosed not by the EBV value but by testing separate strains of white blood cells.
So for The Plan:
We are administering anti-viral meds and taking her immunosuppresant way down. Hoping that her body will fight the EBV. Remember that for the sake of her liver, fighting is not a good thing. We don't want it to get attacked in this war we are in effect starting.
In two weeks the plan is to re-test her EBV level. From there if it is down, then we can breath a little bit easier and monitor the EBV for the rest of her life. If it is up...well lets just not talk about that right now ok?
EBV value = PTLD Danger
50-400 = Kind of scary but constant monitoring is needed
400-1000 = High alert
1000-4000 = Scary High Alert
4000-6000 = Dark Clouds are on the horizon
6000-20,000 PTLD is next to eminent
Jada Rose is at 6000
I put 20,000 out there because the Liver Clinic said they have kids who reach this level and that is when it gets stormy. Now as I stated above PTLD is diagnosed not by the EBV value but by testing separate strains of white blood cells.
So for The Plan:
We are administering anti-viral meds and taking her immunosuppresant way down. Hoping that her body will fight the EBV. Remember that for the sake of her liver, fighting is not a good thing. We don't want it to get attacked in this war we are in effect starting.
In two weeks the plan is to re-test her EBV level. From there if it is down, then we can breath a little bit easier and monitor the EBV for the rest of her life. If it is up...well lets just not talk about that right now ok?
Monday, June 16, 2008
EBV......$h# !
I'm at work and seriously do not want people to see my eyes right now so I am going to update whomever reads this with some shitty news we got today. Jada Rose has EBV. That is Epstein Barr Virus. This is a pretty bad thing...manageable, but bad. LiverFamilies.org had a post regarding it and it explains it better than I do...
EBV (Epstein Barr Virus) is a herpes virus; it's probably the MOST common virus in humans. Many adults will have copies of this virus in them, and not even know it. If you've ever had mono, you've got EBV copies.The reason EBV is so dangerous in post-transplant patients is because most immune-suprressive drugs (like Prograf) suppress the T-cells in the body. Suppression of these T-cells can cause the EBV to replicate uncontrollably in the body. The most typical EBV copies are attached to your B-cells, and suppression of your natural killer cells and cytotoxic cells (both T-cells) can cause these B-cells to replicate over and over, causing a high EBV titer.
This over-production of the B-cells is known as post-transplant lymphoproliferative disorder. Lympho = B-cell; proliferative = over-production (in layman's terms!). There are a couple of types of PTLD, but the distinction is usually not made as far as I understand.
Treatment usually ranges from lowering/dropping immune-suppressive therapy to allow the T-cells room to fight, to adding an anti-viral to try to combat the virus cells, to chemotherapy to suppress the tumors and the B-cell population.
So yah this pretty much sucks! Jada will have this for the rest of her life, and we will likely be fighting it for as long. EBV can lead to tumors, lesions, and cancer all pretty scary stuff. My poor sisters called me and tried to talk to me but I have some sort of defense mechanism that causes me to have a flat affect when I try to explain it. I can type this info, but the emotion of such thoughts and possiblities comming out of my mouth is simply too much right now...sorry Bird and Kat.
Perhaps the most difficult thing is the harsh reality of our situation: Jada Rose is a liver transplant recipient. We were told that a liver transplant was not a cure but rather trading one set of problems for a whole new set of problems. On the positive side, this CAN be managed. Its going to be a lot of work but we are capable of dealing with this.
ps. For the second year in a row Fathers Day was absolutely euphoric for me. I LOVE THIS LITTLE GIRL SO MUCH!
EBV (Epstein Barr Virus) is a herpes virus; it's probably the MOST common virus in humans. Many adults will have copies of this virus in them, and not even know it. If you've ever had mono, you've got EBV copies.The reason EBV is so dangerous in post-transplant patients is because most immune-suprressive drugs (like Prograf) suppress the T-cells in the body. Suppression of these T-cells can cause the EBV to replicate uncontrollably in the body. The most typical EBV copies are attached to your B-cells, and suppression of your natural killer cells and cytotoxic cells (both T-cells) can cause these B-cells to replicate over and over, causing a high EBV titer.
This over-production of the B-cells is known as post-transplant lymphoproliferative disorder. Lympho = B-cell; proliferative = over-production (in layman's terms!). There are a couple of types of PTLD, but the distinction is usually not made as far as I understand.
Treatment usually ranges from lowering/dropping immune-suppressive therapy to allow the T-cells room to fight, to adding an anti-viral to try to combat the virus cells, to chemotherapy to suppress the tumors and the B-cell population.
So yah this pretty much sucks! Jada will have this for the rest of her life, and we will likely be fighting it for as long. EBV can lead to tumors, lesions, and cancer all pretty scary stuff. My poor sisters called me and tried to talk to me but I have some sort of defense mechanism that causes me to have a flat affect when I try to explain it. I can type this info, but the emotion of such thoughts and possiblities comming out of my mouth is simply too much right now...sorry Bird and Kat.
Perhaps the most difficult thing is the harsh reality of our situation: Jada Rose is a liver transplant recipient. We were told that a liver transplant was not a cure but rather trading one set of problems for a whole new set of problems. On the positive side, this CAN be managed. Its going to be a lot of work but we are capable of dealing with this.
ps. For the second year in a row Fathers Day was absolutely euphoric for me. I LOVE THIS LITTLE GIRL SO MUCH!
Wednesday, June 11, 2008
Monday, June 9, 2008
LOOOOoonnng post!
BREAKING NEWS!
First and Foremost JADA ROSE WENT POTTY IN A "BIG GIRL POTTY YESTERDAY!" We were very excited. We haven't been pushing her very hard to go potty in the toilette. So yesterday when she asked to potty? Andrea was somewhat surprised. She set her on the toilette and the rest is history!
HEALTH CONCERN UPDATE
A few weeks ago we were somewhat concerned about Jada's platelet count. Today they are running some more labs to see if the count is still low. Apparently normal is 150,000 or higher. Jada was at 130,000. You don't worry until it is well below 100,000. But they are watching it. Also we have been increasing Jada's dose on her immune suppressants. :( She is now at 90 ml, up from 80 ml. Overall however, Jada is very healthy!
REGARDING OUR LAGOON INFATUATION
I need to make an apology for all the Lagoon stuff. I realized I may have a slight problem when I asked Teya to watch Jada's Lagoon Video last week. Teya's first response was "it was...LOOOOOng" It occurred to me that this might not be as big a deal to others as it is to us. So please allow me to explain our obvious Lagoon infatuation: Throughout the week I am working 15+ hours a day, and when I do see Jada in the late evening her one request is "MONSTER RIDES?" So Saturday evenings we jump in the car and spend 3-4 hours at Lagoon. It is the highlight of the week for both of us! If you are sick of hearing about Lagoon you may want to stop reading now. But I need to give you a fair warning: If you see Jada and want to talk to her? She will almost assuredly want to talk about "Monster Rides".
Up until now Jada has only been on a ride by herself once. That was a car ride and she was in tears by the time it came back around. I have been begging Teya and Loni to get lil Troy, and Kit out with us so Jada would have a co-pilot and could ride the airplanes, the whales, spaceships, helicopters etc. This last Saturday Jada saw a ride that had elephants, dragons, and ladybugs flying in a circle. She turned my head and said "Ride?" I told her she would have to ride it all by her self because daddy was too big to ride on it with her. She replied "By Self?" then ran into the line (without me) :( So, over the next several hours I turned into one of those parents that I used to feel sorry for,leaning against the gate making faces and cheering on my kid as though I was at a Football game. The purpose of my cheering? My kid figured out how to pull a stick towards her, causing her "plane" to soar into the air...
Heres a little tidbit of information for anyone who might read this. Lagoon season pass costs like $79. IHC employees are $39 according to Teya. We have already gone 8 times! If you live even remotely close to Lagoon it is an extremely motivating tool when devising rewards and penalties for behavior. For instance most tantrums can be avoided with Jada Rose by simply saying the words "Good Girls get to go ride on Monster Rides"...Well worth the money in my opinion. Now there are some pressing issues for people who are germ-a-phobes like us. As many may remember the Lagoon crowd is not as hygienically educated as many of us would like. Here is a list of precautions we take. I know that most people don't have to deal with avoiding germs like we do, but hey blogs are for narcissistic expression, so humor me as if I was giving advice that might actually be useful to "normal people".
1.We NEVER NEVER NEVER go near Lagoon a Beach. YUCK! Can you say Crypto-sporidium cesspool?
2.The other obstacle is avoiding face to face germs. I find the best way to avoid this is putting your little one on your shoulders. This keeps them out of the faces of other people coughing and hacking. As well as providing an extremely effective upper back and shoulder workout! Just be sure to duck several inches lower for some of those low hanging trees! Especially if your name is Dan Briggs or Craigy Chilton!
3. Take a package of sani-wipes and wipe down each ride. It only takes a split second, and when you think of the sticky hands that have been touching that handle/bar all day...ewwww.
4. Sunscreen Sunscreen Sunscreen!
5. If you are just taking one child, and don't want to worry about a stroller. Park at the northern end of the main parking lot next to the trees. That way you don't need to haul a diaper bag around all day and when "the moment" comes that you need it? You know exactly where you parked. I found that by the time I grabbed the diaper bag out of the locker, cleaned the bathroom space, and changed the diaper, I could have just walked to the car and taken care of it in half the time.
First and Foremost JADA ROSE WENT POTTY IN A "BIG GIRL POTTY YESTERDAY!" We were very excited. We haven't been pushing her very hard to go potty in the toilette. So yesterday when she asked to potty? Andrea was somewhat surprised. She set her on the toilette and the rest is history!
HEALTH CONCERN UPDATE
A few weeks ago we were somewhat concerned about Jada's platelet count. Today they are running some more labs to see if the count is still low. Apparently normal is 150,000 or higher. Jada was at 130,000. You don't worry until it is well below 100,000. But they are watching it. Also we have been increasing Jada's dose on her immune suppressants. :( She is now at 90 ml, up from 80 ml. Overall however, Jada is very healthy!
REGARDING OUR LAGOON INFATUATION
I need to make an apology for all the Lagoon stuff. I realized I may have a slight problem when I asked Teya to watch Jada's Lagoon Video last week. Teya's first response was "it was...LOOOOOng" It occurred to me that this might not be as big a deal to others as it is to us. So please allow me to explain our obvious Lagoon infatuation: Throughout the week I am working 15+ hours a day, and when I do see Jada in the late evening her one request is "MONSTER RIDES?" So Saturday evenings we jump in the car and spend 3-4 hours at Lagoon. It is the highlight of the week for both of us! If you are sick of hearing about Lagoon you may want to stop reading now. But I need to give you a fair warning: If you see Jada and want to talk to her? She will almost assuredly want to talk about "Monster Rides".
Up until now Jada has only been on a ride by herself once. That was a car ride and she was in tears by the time it came back around. I have been begging Teya and Loni to get lil Troy, and Kit out with us so Jada would have a co-pilot and could ride the airplanes, the whales, spaceships, helicopters etc. This last Saturday Jada saw a ride that had elephants, dragons, and ladybugs flying in a circle. She turned my head and said "Ride?" I told her she would have to ride it all by her self because daddy was too big to ride on it with her. She replied "By Self?" then ran into the line (without me) :( So, over the next several hours I turned into one of those parents that I used to feel sorry for,leaning against the gate making faces and cheering on my kid as though I was at a Football game. The purpose of my cheering? My kid figured out how to pull a stick towards her, causing her "plane" to soar into the air...
Heres a little tidbit of information for anyone who might read this. Lagoon season pass costs like $79. IHC employees are $39 according to Teya. We have already gone 8 times! If you live even remotely close to Lagoon it is an extremely motivating tool when devising rewards and penalties for behavior. For instance most tantrums can be avoided with Jada Rose by simply saying the words "Good Girls get to go ride on Monster Rides"...Well worth the money in my opinion. Now there are some pressing issues for people who are germ-a-phobes like us. As many may remember the Lagoon crowd is not as hygienically educated as many of us would like. Here is a list of precautions we take. I know that most people don't have to deal with avoiding germs like we do, but hey blogs are for narcissistic expression, so humor me as if I was giving advice that might actually be useful to "normal people".
1.We NEVER NEVER NEVER go near Lagoon a Beach. YUCK! Can you say Crypto-sporidium cesspool?
2.The other obstacle is avoiding face to face germs. I find the best way to avoid this is putting your little one on your shoulders. This keeps them out of the faces of other people coughing and hacking. As well as providing an extremely effective upper back and shoulder workout! Just be sure to duck several inches lower for some of those low hanging trees! Especially if your name is Dan Briggs or Craigy Chilton!
3. Take a package of sani-wipes and wipe down each ride. It only takes a split second, and when you think of the sticky hands that have been touching that handle/bar all day...ewwww.
4. Sunscreen Sunscreen Sunscreen!
5. If you are just taking one child, and don't want to worry about a stroller. Park at the northern end of the main parking lot next to the trees. That way you don't need to haul a diaper bag around all day and when "the moment" comes that you need it? You know exactly where you parked. I found that by the time I grabbed the diaper bag out of the locker, cleaned the bathroom space, and changed the diaper, I could have just walked to the car and taken care of it in half the time.
Tuesday, June 3, 2008
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