Thanks to St. Luke's for giving Jordan, Brianna, Shane, Ryan and Audra the use of one of their conference rooms for all the fun, games, and snacks.
Friday, April 25, 2008
The Big 21
After last night's intense gaming session, this has been a quiet and restful day, a day for Jordan to be revitalized by the 32nd transfusion of platelets, and the 21st transfusion of packed red blood cells. With platelets at 12K, and HGB at 8.1,it was unquestionably time well spent. Boo hiss, LDH is on the climb, at 4,285.
Thanks to St. Luke's for giving Jordan, Brianna, Shane, Ryan and Audra the use of one of their conference rooms for all the fun, games, and snacks.
Thanks to St. Luke's for giving Jordan, Brianna, Shane, Ryan and Audra the use of one of their conference rooms for all the fun, games, and snacks.
Thursday, April 24, 2008
Platelets, More Precious Than Gold
First, we have three pieces of good news to share.
1. Jordan's platelets seem slightly improved.
2. He's feeling a whole lot better.
3. We have an appointment with Dr. Hawkins in Seattle, on May 1st.
Jordan received his 31st platelet transfusion just before midnight on the 22nd.CBC's are drawn early each morning, so the new platelets were still fairly well represented a few hours later, at 33K. Today, they're down to 20K. WBC's are worrisome at .1. And hemoglobin is at 9.3. A little lower, typically 8.5 and below, and a transfusion of packed red blood cells is ordered. we'll predict transfusions of both kinds will be called for by tomorrow morning. Unless, of course, something even better happens,and the tide turns in a more favorable direction. Thank you for your prayers, we know they're making a difference. As a small reward, how about a primer on platelets, for your edification.
What are platelets?
Platelets are tiny cells that circulate in the blood and whose function is to take part in the clotting process.Inside each platelet are many granules, containing compounds that enhance the ability of platelets to stick to each other and also to the surface of a damaged blood vessel wall. The platelet count in the circulating blood is normally between 150 and 400millionper millilitre of blood. (Our lab lists it as between 150K and 400K). The average life span of a platelet in the blood is 10 days.
What do platelets do?
Platelets are essential in the formation of blood clots to prevent haemorrhage -bleeding from a ruptured blood vessel.An adequate number of normally functioning platelets is also needed to prevent leakage of red blood cells from apparently uninjured vessels. In the event of bleeding, muscles in the vessel wall contract and reduce blood flow.The platelets then stick to each other (aggregation) and hold on to the vessel wall(primary haemostasis). The coagulation factors are then activated, resulting in normally liquid blood becoming an insoluble clot or glue.
What are the risks of a low platelet count?
The main effect of a reduced platelet count is an increased risk of bleeding, but this rarely occurs until there are less than 80-100 million platelets per ml.There is not a close relationship between the number of platelets and the severity of bleeding, but there is an increasing risk of haemorrhage if platelet numbers fall or if platelet function is impaired (for example by aspirin, which reduces the 'stickiness' of the platelets). There is a particularly high risk of spontaneous bleeding once the platelet count drops below 10 million per ml. The bleeding is usually seen on the skin in the form of tiny pin-prick haemorrhages (purpura), or bruises (ecchymoses) following minor trauma.Bleeding from the nose and the gums is also quite common. More serious haemorrhage can occur at the back of the eye (retina), sometimes threatening sight.The most serious complication, which is potentially fatal, is spontaneous bleeding inside the head (intracranial) or from the lining of the gut (gastrointestinal).
For all of the above, and more, go to:
http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm
1. Jordan's platelets seem slightly improved.
2. He's feeling a whole lot better.
3. We have an appointment with Dr. Hawkins in Seattle, on May 1st.
Jordan received his 31st platelet transfusion just before midnight on the 22nd.CBC's are drawn early each morning, so the new platelets were still fairly well represented a few hours later, at 33K. Today, they're down to 20K. WBC's are worrisome at .1. And hemoglobin is at 9.3. A little lower, typically 8.5 and below, and a transfusion of packed red blood cells is ordered. we'll predict transfusions of both kinds will be called for by tomorrow morning. Unless, of course, something even better happens,and the tide turns in a more favorable direction. Thank you for your prayers, we know they're making a difference. As a small reward, how about a primer on platelets, for your edification.
What are platelets?
Platelets are tiny cells that circulate in the blood and whose function is to take part in the clotting process.Inside each platelet are many granules, containing compounds that enhance the ability of platelets to stick to each other and also to the surface of a damaged blood vessel wall. The platelet count in the circulating blood is normally between 150 and 400millionper millilitre of blood. (Our lab lists it as between 150K and 400K). The average life span of a platelet in the blood is 10 days.
What do platelets do?
Platelets are essential in the formation of blood clots to prevent haemorrhage -bleeding from a ruptured blood vessel.An adequate number of normally functioning platelets is also needed to prevent leakage of red blood cells from apparently uninjured vessels. In the event of bleeding, muscles in the vessel wall contract and reduce blood flow.The platelets then stick to each other (aggregation) and hold on to the vessel wall(primary haemostasis). The coagulation factors are then activated, resulting in normally liquid blood becoming an insoluble clot or glue.
What are the risks of a low platelet count?
The main effect of a reduced platelet count is an increased risk of bleeding, but this rarely occurs until there are less than 80-100 million platelets per ml.There is not a close relationship between the number of platelets and the severity of bleeding, but there is an increasing risk of haemorrhage if platelet numbers fall or if platelet function is impaired (for example by aspirin, which reduces the 'stickiness' of the platelets). There is a particularly high risk of spontaneous bleeding once the platelet count drops below 10 million per ml. The bleeding is usually seen on the skin in the form of tiny pin-prick haemorrhages (purpura), or bruises (ecchymoses) following minor trauma.Bleeding from the nose and the gums is also quite common. More serious haemorrhage can occur at the back of the eye (retina), sometimes threatening sight.The most serious complication, which is potentially fatal, is spontaneous bleeding inside the head (intracranial) or from the lining of the gut (gastrointestinal).
For all of the above, and more, go to:
http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm
Tuesday, April 22, 2008
Back in the Big House
Jordan was re-admitted to the hospital this morning. Oh! This is so old it's desiccated, antiquated, and we pray all meds will be potentiated. Also, we continue to pray for more platelets, and less pain! WBC's, .2; HGB, 10.1; platelets, 10K. No platelet transfusion today though. Just fluids, and morphine. The titrated morphine drip began at 6 mg/h. And the Neupogen injections have been discontinued.
"In the face of uncertainty, there is nothing wrong with hope." (from Love, Medicine and Miracles, by Bernie S. Siegel, M.D.)
"...I, the Lord God, do visit my people in their afflictions." (MSH 24:14)
"In the face of uncertainty, there is nothing wrong with hope." (from Love, Medicine and Miracles, by Bernie S. Siegel, M.D.)
"...I, the Lord God, do visit my people in their afflictions." (MSH 24:14)
Monday, April 21, 2008
A Little Snack...of Words
Did someone say that seeing Jordan's hemoglobin jump up to 13.0 was a nice surprise? Well, it wasn't. We've learned that the jump was a result of dehydration, which causes the blood to become concentrated, giving an artificially high HGB reading. Today's hemoglobin, after rehydration, was at 10.5; WBC's, .3; platelets were 13K. He had his third platelet transfusion in three days, the 30th. Pour on the prayers for platelet production, please!
He is home again though, for which we're all grateful. However, the dreaded, albeit necessary, Neupogen injections were begun yesterday, and already, he's needing Oxycodone, Tylenol, and Dilaudid to help with pain management. Ativan and Marinol are doing a good job keeping the nausea mostly at bay. He'll be receiving one liter of IV fluids each day when he goes in for labs, until it's certain that the dehydration is completely resolved.
Another great letter from the mission, from Pres. Johnson, was welcomed today, as were several phone calls, e-mails, comments, and other evidences of your friendship and concern. Love and thanks to each and every one of you, for all you do.
He is home again though, for which we're all grateful. However, the dreaded, albeit necessary, Neupogen injections were begun yesterday, and already, he's needing Oxycodone, Tylenol, and Dilaudid to help with pain management. Ativan and Marinol are doing a good job keeping the nausea mostly at bay. He'll be receiving one liter of IV fluids each day when he goes in for labs, until it's certain that the dehydration is completely resolved.
Another great letter from the mission, from Pres. Johnson, was welcomed today, as were several phone calls, e-mails, comments, and other evidences of your friendship and concern. Love and thanks to each and every one of you, for all you do.
Sunday, April 20, 2008
Blue Sunday
We hope it's just for the night, but Jordan felt so unwell when Dan took him up for his daily labs, that he was re-admitted to the hospital. Hemoglobin leapt up to13.0 today, a nice surprise. WBC's still at .2, which means Neupogen injections will probably resume...and so will the bone pain, the morphine, and its side effects.The on-call doc ordered another transfusion of platelets (the 29th) because they were only up to 15K despite yesterday's additions. But he got more missionary mail from Pres. and Sister Osmond, a surefire way to put a littlemore sun back into this Sunday.
Saturday, April 19, 2008
Home
Today's hemoglobin, 11.6; WBC's, .2; platelets, 9K, prompting the 28th platelet transfusion. LDH at 2,816. The counts aren't where we want them, but Jordan is, he's home!
We brought home a few surprises for the grand occasion. So far, only Shane and Bonnie have been brave enough to try the fresh green wheat grass juice. But there's more in the fridge, just waiting for the next brave sipper. What did garner some interest were the new wok and bamboo steamer we picked up while doing a little grocery shopping this afternoon. Brianna immediately set about preparing an authentic Chinese dinner for us, or as close as we could get with our Wal--Mart provisions. Jordan's absent appetite and declining weight keep us looking for tempting, nutrient- and calorie-dense foods to serve. Forget nonfat and 2%, we've gone back to whole milk for now.
We brought home a few surprises for the grand occasion. So far, only Shane and Bonnie have been brave enough to try the fresh green wheat grass juice. But there's more in the fridge, just waiting for the next brave sipper. What did garner some interest were the new wok and bamboo steamer we picked up while doing a little grocery shopping this afternoon. Brianna immediately set about preparing an authentic Chinese dinner for us, or as close as we could get with our Wal--Mart provisions. Jordan's absent appetite and declining weight keep us looking for tempting, nutrient- and calorie-dense foods to serve. Forget nonfat and 2%, we've gone back to whole milk for now.
Friday, April 18, 2008
Big Possibilities
Way back on March 17th, we contacted the NIH (National Institutes of Health) in hopes of finding a clinical trial for Jordan to participate in. It's a huge deal, so it has understandably taken a few phone calls to get to this point, but today we were told that they are interested in pursuing something that might help him. A bone marrow transplant! I think they may have been swayed upon hearing he has six brothers, at least one of whom will surely be a perfect match as a bone marrow donor. Roll up those sleeves, boys, ve vant to test your blood.
We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.
Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.
This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.
We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.
Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.
This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.
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