Well, its official! Greg has hit the $1 million mark with his insurance company, which means he's reached the policy limits. According to his coordinator at the insurance company, he's the 4th person she's ever known to have done this. And it only took 6 years, 3 stem cell transplants, 2 life-threatening illnesses, a dozen or so less serious infections and all the miscellaneous stuff that goes along with it. Don't panic though, my insurance just switches over from secondary to primary. The only problem is, he's going to have to switch doctors. He's approved to stay with Barnes through this transplant, then he has to switch to SLU when in St. Louis, and Cox when in Springfield. I'm hoping the Feds switch back to Premier this fall, but if they don't, we'll be looking for a new oncologist in town. I'm open to suggestions.
Greg went for treatment today and turns out he didn't need any. His platelets were 31! And, he hasn't needed red blood cells for well over a month. The CMV (infection) is a little worse, and the doc switched meds (from the $4800 a month one) to an IV he will give to himself through his central line. Yikes! He's at Hope Lodge now waiting for the home health nurse to come and teach him how to do it. He IS a doctor, after all.
The numbers are all looking good. I'm going up for the weekend, and will see Dr. Vij with Greg on Friday morning. I'm hoping he doesn't have much to say.
I'll post more then.
Thanks to all!
Love,
Us.
Tuesday, July 28, 2009
Monday, July 27, 2009
Steady as He Goes
I had a busy weekend, so once again I apologize for not posting as promised. Saturday Matthew and I worked like Egyptian slaves sorting toys and picking things to get rid of. Sunday, we had a great day at the lake with the Altoonians. Matthew went tubing all by himself and I didn't even have a nervous breakdown! (Although it was close!). Huge thanks to Tom and Julie for a wonderful day. (And, I was right -- Matthew was asleep by the time we got to SDC).
Greg's platelets held at 19 from Tuesday to Friday. They gave him some Friday, but they weren't HLA matched. He'll go again tomorrow for labs, so we'll see if he can hold the non-matched ones. We were pretty happy he held all week. That's a good sign.
The GVHD is a little worse, so Dr. Vij upped the steroids again. His skin rash is a good indicator, and its worse. But, more importantly, his kidneys, liver and lungs can be affected by GVHD, so that's what we're more concerned about. But, Vij is on top of it, and its not nearly time to panic.
The CMV is worse, too. That med was costing $2400 per month (not to us -- we got the first month free and Greg is working on getting it set up so we won't have to pay at all). But, Vij doubled it, so theoretically it would cost $4800 per month. (I did that math all by myself!). Don't pass the hat just yet. Vij said if we can't work out the free drugs, he'll give it IV and that way insurance will HAVE to pay for it. The only drawback to that is its twice a day. But I'm sure Greg will be able to work it out with the drug company to send it free. I'll keep you posted.
That's about all for now. Thanks to all for the prayers. Keep 'em coming!
Us
Greg's platelets held at 19 from Tuesday to Friday. They gave him some Friday, but they weren't HLA matched. He'll go again tomorrow for labs, so we'll see if he can hold the non-matched ones. We were pretty happy he held all week. That's a good sign.
The GVHD is a little worse, so Dr. Vij upped the steroids again. His skin rash is a good indicator, and its worse. But, more importantly, his kidneys, liver and lungs can be affected by GVHD, so that's what we're more concerned about. But, Vij is on top of it, and its not nearly time to panic.
The CMV is worse, too. That med was costing $2400 per month (not to us -- we got the first month free and Greg is working on getting it set up so we won't have to pay at all). But, Vij doubled it, so theoretically it would cost $4800 per month. (I did that math all by myself!). Don't pass the hat just yet. Vij said if we can't work out the free drugs, he'll give it IV and that way insurance will HAVE to pay for it. The only drawback to that is its twice a day. But I'm sure Greg will be able to work it out with the drug company to send it free. I'll keep you posted.
That's about all for now. Thanks to all for the prayers. Keep 'em coming!
Us
Wednesday, July 22, 2009
Its a Game of Inches
Greg continues to do well in St. Louis, and he and Kacey seem to be having a good time. They have a TV now (thanks Kacey!), so that helps.
Not much news to report except on the platelet front. Last Friday when I blogged, we were at clinic, waiting for the blood bank to send some. Greg was at 16. The transfusion cutoff is 20. Turns out that, since he needs the HLA matched, and there's always a shortage of platelets anyway, they didn't have any. They sent him home with instructions to come back Tuesday (or to call if he started bleeding!).
He went back yesterday. His platelets were up to 19. He made some all by himself! Granted, not many, but still, better than dropping. And, they STILL didn't have any to give him. (My guess is that when there's a shortage they save them for people who are at 3 or 4 -- Greg's been there.) Anyway, he'll go back Friday, so it will be interesting to see if he can make any more on his own.
Matthew is still in "quarantine" from dad due to his immunizations, so we're staying home for the weekend. Believe it or not, we have to start getting ready for back to school, which is August 19. Where did the summer go?
I'll post again Friday with the platelet count and any other news. In the meantime, thanks, as usual, for all the prayers and support.
Love,
Ann & Greg
Not much news to report except on the platelet front. Last Friday when I blogged, we were at clinic, waiting for the blood bank to send some. Greg was at 16. The transfusion cutoff is 20. Turns out that, since he needs the HLA matched, and there's always a shortage of platelets anyway, they didn't have any. They sent him home with instructions to come back Tuesday (or to call if he started bleeding!).
He went back yesterday. His platelets were up to 19. He made some all by himself! Granted, not many, but still, better than dropping. And, they STILL didn't have any to give him. (My guess is that when there's a shortage they save them for people who are at 3 or 4 -- Greg's been there.) Anyway, he'll go back Friday, so it will be interesting to see if he can make any more on his own.
Matthew is still in "quarantine" from dad due to his immunizations, so we're staying home for the weekend. Believe it or not, we have to start getting ready for back to school, which is August 19. Where did the summer go?
I'll post again Friday with the platelet count and any other news. In the meantime, thanks, as usual, for all the prayers and support.
Love,
Ann & Greg
Friday, July 17, 2009
Good News!
Sorry its been almost a week since I last posted, but we've been really limited in finding Internet connections. The other day we were at the clinic, and I would have posted, but by the time I did my work for work, my battery only had 15 minutes left. The first time I DIDN'T lug the power chord along. Go figure.
We are at clinic now, and just left our meeting with Dr. Vij. We got what we consider to be very good news: the results of Greg's last bone marrow biopsy showed 3 percent cancer cells. In medical terms, that's practically none at all. Dr. Vij's exact words were: "That's as good as anyone could expect." For the first time in about 6 to 9 months, he was smiling. We know this is still a day by day process, and anything can happen, but we're very encouraged. He needs platelets today, but that's not unusual. They're the last things to come back. His frequency of needing them has decreased, and they've been holding better. And, he hasn't needed red blood in almost 2 weeks. Loyal Readers will remember that he was needing platelets every other day and red blood about twice a week pre-transplant. While Dr. Vij is very happy with the way things are progressing, he says its still going to be at least a month before Greg can even think about going home. These things are very unpredictable, and he potentially could go downhill quickly, but, he's moving in the right direction, and for now, that's plenty good enough.
The biggest issue this week has been magnesium. His has been very low all week. I'm not sure what magnesium does, but evidently you need more than he has. Its a 2 hour infusion, so it ties up our day. That's 2 hours AFTER the pharmacy sends it up. On Wednesday, it took 3 hours for the pharmacy to send it. We've gotten HLA matched platelets faster than that. But, that's what we do now -- run from pharmacy to pharmacy when on the "outside" and wait for the pharmacy when on the "inside."
I keep forgetting to blog that we finally found out what his blood culture grew during his last hosptalization. Its a virus called "CMV" which can be serious if untreated. But, he's on meds for it now (at a cost of $700 per month!). I'm glad we have good insurance. The meds can cause his blood counts to drop, which is probably why he needs platelets today. Sigh.
The GVHD is still a bit of an issue, but is controlled through steroids. The steroids make the blood sugars go up. Actually, he's on about 18 different meds, half of which to treat his disease, and the other half to treat the side effects from the first half. Just keeping track of them is a full time job.
Greg gets stronger every day. We've been trying to have an outing of some sort each day. Having no TV and no Internet is interesting. We've been shopping for stuff we needed & couldn't find in Springfield, and went to the art museum yesterday. We also had to buy Greg some new clothes. He's lost about 30 pounds, and his pants were literally falling off. He looked like an orphan. But, the steroids are stimulating his appetite some, and we've found some really great restaurants in the area. We've had Italian (of course!), sushi, pizza, Mexican, barbecue, and found some great burger joints and delis. I'm going to need new clothes if we keep this up, but not for the same reason Greg does!
My plan is to go home Sunday, when my niece Kacey gets here. She's going to spend her summer vacation with Uncle Greg at the halfway house -- we can't thank her enough for volunteering. Its a huge sacrifice on her part. But, with Greg feeling stronger, we hope to make this fun for her too. There's plenty to see and do in St. Louis, so they're going to try to make the most of it. I'm looking forward to seeing the boys, as I really miss them. Matthew has been having a wonderful time, though. Kris and the gang have been keeping him busy, and he's been happy. No tearful phone calls (yet!). And Eric is enjoying his independence. He swears he hasn't burned the house down yet.
Thanks to Sally and the Bunco crew for the card. It really brightened our day. I hope to make it to bunco sometime in 2009. Keep your fingers crossed for next month. Thanks again, too, to everyone who's been helping out, especially to the Wherley's and Altoonians, and to all for your thoughts, good wishes and prayers. Based on the news we got today, I'd say they're working overtime!
Love,
Us.
We are at clinic now, and just left our meeting with Dr. Vij. We got what we consider to be very good news: the results of Greg's last bone marrow biopsy showed 3 percent cancer cells. In medical terms, that's practically none at all. Dr. Vij's exact words were: "That's as good as anyone could expect." For the first time in about 6 to 9 months, he was smiling. We know this is still a day by day process, and anything can happen, but we're very encouraged. He needs platelets today, but that's not unusual. They're the last things to come back. His frequency of needing them has decreased, and they've been holding better. And, he hasn't needed red blood in almost 2 weeks. Loyal Readers will remember that he was needing platelets every other day and red blood about twice a week pre-transplant. While Dr. Vij is very happy with the way things are progressing, he says its still going to be at least a month before Greg can even think about going home. These things are very unpredictable, and he potentially could go downhill quickly, but, he's moving in the right direction, and for now, that's plenty good enough.
The biggest issue this week has been magnesium. His has been very low all week. I'm not sure what magnesium does, but evidently you need more than he has. Its a 2 hour infusion, so it ties up our day. That's 2 hours AFTER the pharmacy sends it up. On Wednesday, it took 3 hours for the pharmacy to send it. We've gotten HLA matched platelets faster than that. But, that's what we do now -- run from pharmacy to pharmacy when on the "outside" and wait for the pharmacy when on the "inside."
I keep forgetting to blog that we finally found out what his blood culture grew during his last hosptalization. Its a virus called "CMV" which can be serious if untreated. But, he's on meds for it now (at a cost of $700 per month!). I'm glad we have good insurance. The meds can cause his blood counts to drop, which is probably why he needs platelets today. Sigh.
The GVHD is still a bit of an issue, but is controlled through steroids. The steroids make the blood sugars go up. Actually, he's on about 18 different meds, half of which to treat his disease, and the other half to treat the side effects from the first half. Just keeping track of them is a full time job.
Greg gets stronger every day. We've been trying to have an outing of some sort each day. Having no TV and no Internet is interesting. We've been shopping for stuff we needed & couldn't find in Springfield, and went to the art museum yesterday. We also had to buy Greg some new clothes. He's lost about 30 pounds, and his pants were literally falling off. He looked like an orphan. But, the steroids are stimulating his appetite some, and we've found some really great restaurants in the area. We've had Italian (of course!), sushi, pizza, Mexican, barbecue, and found some great burger joints and delis. I'm going to need new clothes if we keep this up, but not for the same reason Greg does!
My plan is to go home Sunday, when my niece Kacey gets here. She's going to spend her summer vacation with Uncle Greg at the halfway house -- we can't thank her enough for volunteering. Its a huge sacrifice on her part. But, with Greg feeling stronger, we hope to make this fun for her too. There's plenty to see and do in St. Louis, so they're going to try to make the most of it. I'm looking forward to seeing the boys, as I really miss them. Matthew has been having a wonderful time, though. Kris and the gang have been keeping him busy, and he's been happy. No tearful phone calls (yet!). And Eric is enjoying his independence. He swears he hasn't burned the house down yet.
Thanks to Sally and the Bunco crew for the card. It really brightened our day. I hope to make it to bunco sometime in 2009. Keep your fingers crossed for next month. Thanks again, too, to everyone who's been helping out, especially to the Wherley's and Altoonians, and to all for your thoughts, good wishes and prayers. Based on the news we got today, I'd say they're working overtime!
Love,
Us.
Saturday, July 11, 2009
Settling In
Greg got sprung from the hospital late Thursday, and this is the first opportunity I've had to blog. We had to rush to "Nope Lodge" to get there by the 7 p.m. check in deadline, or else we would have been homeless for the night. We practically slid in the door sideways to make it.
We had to beg to get him discharged Thursday. They wanted to keep him another night. But, I knew he was ready to go on a 3 state killing spree if he didn't get out of there. They were really worried about his blood sugars. Whereas his was soooooo low when he passed out and was admitted, the issue now is that they're through the roof -- above 300. Its because of the GVHD and all the steroids. They made him promise to be good, check his sugars 4 times a day, watch what he eats, and take his insulin. And, the doctor called yesterday to check his numbers in case he needed a medication adjustment. He didn't. The steroids are being gradually reduced, and he was much more active than when he was in the hospital. So, while he still needs insulin a couple of times each day, he's in pretty good shape.
We're getting settled in. Our room is really small, but its free so its hard to complain. Food storage is an issue, too. We get a small bin for the refrigerator, and a small locker for non-perishables. But, we're figuring it out. And, we're eating out, too. Had some great Mexican food and NY-style pizza. We're going to the Hill tonight.
We're at the clinic now. Greg needs platelets today, and because of the HLA match, it could take a while for them to get here. But, we have a TV, so that helps. Funny thing -- there's really nothing good on anyway. Maybe we're not missing too much after all.
Matthew is having a great time with the Altoonians. They went to see Ice Age and ate at Doe's. Today they're going to the lake, and tomorrow Matthew moves over to the Wherley's. Eric and Nik tried their hand at cooking yesterday. Paula Deen's Breakfast Pizza. It starts out with a pancake and marinara sauce. I really didn't want to know any more. But, I've been assured the kitchen has been put back together. And, I got a promise that I wouldn't have to eat that recipe at least.
So, for now we are uneventful, which is how we'd like to keep it for a while. Thanks to all for your help. Pam, Matthew and I are cucumber freaks, so when I'm home next week, we'd be glad to help you out. I'll pass on your message to Eric to see if he wants anything. He's been picking some peppers from our garden, which has been a grand experiment. So far, his taste buds don't seem to have been permantently damaged.
We had to beg to get him discharged Thursday. They wanted to keep him another night. But, I knew he was ready to go on a 3 state killing spree if he didn't get out of there. They were really worried about his blood sugars. Whereas his was soooooo low when he passed out and was admitted, the issue now is that they're through the roof -- above 300. Its because of the GVHD and all the steroids. They made him promise to be good, check his sugars 4 times a day, watch what he eats, and take his insulin. And, the doctor called yesterday to check his numbers in case he needed a medication adjustment. He didn't. The steroids are being gradually reduced, and he was much more active than when he was in the hospital. So, while he still needs insulin a couple of times each day, he's in pretty good shape.
We're getting settled in. Our room is really small, but its free so its hard to complain. Food storage is an issue, too. We get a small bin for the refrigerator, and a small locker for non-perishables. But, we're figuring it out. And, we're eating out, too. Had some great Mexican food and NY-style pizza. We're going to the Hill tonight.
We're at the clinic now. Greg needs platelets today, and because of the HLA match, it could take a while for them to get here. But, we have a TV, so that helps. Funny thing -- there's really nothing good on anyway. Maybe we're not missing too much after all.
Matthew is having a great time with the Altoonians. They went to see Ice Age and ate at Doe's. Today they're going to the lake, and tomorrow Matthew moves over to the Wherley's. Eric and Nik tried their hand at cooking yesterday. Paula Deen's Breakfast Pizza. It starts out with a pancake and marinara sauce. I really didn't want to know any more. But, I've been assured the kitchen has been put back together. And, I got a promise that I wouldn't have to eat that recipe at least.
So, for now we are uneventful, which is how we'd like to keep it for a while. Thanks to all for your help. Pam, Matthew and I are cucumber freaks, so when I'm home next week, we'd be glad to help you out. I'll pass on your message to Eric to see if he wants anything. He's been picking some peppers from our garden, which has been a grand experiment. So far, his taste buds don't seem to have been permantently damaged.
Thursday, July 9, 2009
We're Outta Here
Its Thursday morning and I'm here in St. Louis. I got here yesterday afternoon.
Greg is doing much better. The doc came in this morning and said the plan is to discharge him to Hope Lodge this afternoon. Here's the medical update:
They did a skin biopsy the other day. It confirms that he does have GVHD, but oncology says its at the level they expect, he should have it at this level to show he's "grafting" and that its nothing they can't handle and nothing they're worried about. They're treating him with steroids, so LOW blood sugar won't be a problem for a while. Now we just have to worry about high blood sugar.
They also did a bone marrow biopsy to check to see the progress of his grafting and the level of MDS and multiple myeloma. Those results won't be in for a day or two.
I mentioned last week that his blood cultures grew "something" but that further lab work was needed to know what. As of this a.m., we still don't know. Evidently its a slow grower. But, they're not worried as he has so many antibiotics on board he's covered for just about anything anyone could come up with.
The rash on his legs is improving. Also, the fluid is coming off, and his slippers fit again.
That's about it on the medical front. I'll be here through next week, as they won't let him stay alone on the "outside." The plan for now is my niece Kacey comes next weekend. We're trying to plan fun things to do when she gets here.
Matthew is at the Altoonians. I know he's having a good time. He got his kindergarten shots on the 7th, and the polio one was a live virus, so we have to find out from the docs how long he has to stay away from dad. I'm hoping its just a few days, as the plan was to bring him up the weekend of the 18th. But, the nurse thinks (although she's not sure) its 14 to 21 days. Eric, as usual, is home with pizzas in the freezer.
After we move to Hope Lodge, we won't have WiFi, so updates next week may be sparse. There's a public library down the street, so I'm planning to check it out for Internet access.
Huge thanks to all. Special mention to Amy for the bread, and to the Jones family for the DVDs. I found them on the door step. They will be very welcome when we enter the land of no TV. Thanks again!
Love,
Us
Greg is doing much better. The doc came in this morning and said the plan is to discharge him to Hope Lodge this afternoon. Here's the medical update:
They did a skin biopsy the other day. It confirms that he does have GVHD, but oncology says its at the level they expect, he should have it at this level to show he's "grafting" and that its nothing they can't handle and nothing they're worried about. They're treating him with steroids, so LOW blood sugar won't be a problem for a while. Now we just have to worry about high blood sugar.
They also did a bone marrow biopsy to check to see the progress of his grafting and the level of MDS and multiple myeloma. Those results won't be in for a day or two.
I mentioned last week that his blood cultures grew "something" but that further lab work was needed to know what. As of this a.m., we still don't know. Evidently its a slow grower. But, they're not worried as he has so many antibiotics on board he's covered for just about anything anyone could come up with.
The rash on his legs is improving. Also, the fluid is coming off, and his slippers fit again.
That's about it on the medical front. I'll be here through next week, as they won't let him stay alone on the "outside." The plan for now is my niece Kacey comes next weekend. We're trying to plan fun things to do when she gets here.
Matthew is at the Altoonians. I know he's having a good time. He got his kindergarten shots on the 7th, and the polio one was a live virus, so we have to find out from the docs how long he has to stay away from dad. I'm hoping its just a few days, as the plan was to bring him up the weekend of the 18th. But, the nurse thinks (although she's not sure) its 14 to 21 days. Eric, as usual, is home with pizzas in the freezer.
After we move to Hope Lodge, we won't have WiFi, so updates next week may be sparse. There's a public library down the street, so I'm planning to check it out for Internet access.
Huge thanks to all. Special mention to Amy for the bread, and to the Jones family for the DVDs. I found them on the door step. They will be very welcome when we enter the land of no TV. Thanks again!
Love,
Us
Monday, July 6, 2009
Diagnosis Du Jour
Its Monday morning and I don't have a lot of time, but I'll try to update.
Saturday's diagnosis was GVHD.
Sunday's diagnosis was definitely NOT congestive heart failure, maybe GVHD.
Still no real working theories on what made him lose consciousness, except probably low blood sugar. Don't know if that was a cause or effect.
Definitely maybe some type of infection contributing to all of this.
He's out of ICU now. They moved him in the middle of the night Saturday night. I'm not kidding.
Sadie and Skibby are leaving today. I'm staying in Springfield for a day or two. I plan to head out Wednesday or so. They're trying to get him discharged by the end of the week. He's still weak but is eating now, and actually stood by the side of the bed for a few seconds yesterday.
Thanks to all for the help over the weekend. I really appreciate it. Special thanks to Pam for the treats, Lori for the groceries, and Russ & Todd for trying to figure out my electricity problem.
Please keep the prayers coming. Seems like we always "need them more than ever."
Love,
Ann
Saturday's diagnosis was GVHD.
Sunday's diagnosis was definitely NOT congestive heart failure, maybe GVHD.
Still no real working theories on what made him lose consciousness, except probably low blood sugar. Don't know if that was a cause or effect.
Definitely maybe some type of infection contributing to all of this.
He's out of ICU now. They moved him in the middle of the night Saturday night. I'm not kidding.
Sadie and Skibby are leaving today. I'm staying in Springfield for a day or two. I plan to head out Wednesday or so. They're trying to get him discharged by the end of the week. He's still weak but is eating now, and actually stood by the side of the bed for a few seconds yesterday.
Thanks to all for the help over the weekend. I really appreciate it. Special thanks to Pam for the treats, Lori for the groceries, and Russ & Todd for trying to figure out my electricity problem.
Please keep the prayers coming. Seems like we always "need them more than ever."
Love,
Ann
Friday, July 3, 2009
Update
Its Friday night and I'm home for the weekend. Skibby and Sadie are in St. Louis with Greg. I got home about 4.
Our Hero is doing OK. He got off the oxygen today, and they're talking about moving him off of ICU, subject to (as usual) bed availability. (Seems like our lives for past 6 months have revolved around waiting for a bed at Barnes.) But, he's really weak, and still a wee bit confused. I don't blame him. I found ICU disorienting, and I got to leave every once in a while. They say there's a condition called ICU psychosis, and I believe it. I was only gone about an hour, on the road home, and my mind cleared and I was able to think much better. Greg is also eating some, but its hard. The tray they sent up yesterday was inedible. "Chopped steak" they had the nerve to call it. Looked (and tasted) like something Eric hits around on the driveway with his hockey sticks.
The exhaustion is setting in, so I'll make this short. I'll get more details to you over the weekend. I'm still trying to figure out how I'm going to make sure Greg has someone with him at all times in St. Louis, still go to work, and make sure Matthew doesn't completely lose it. I called the duplex lady from last summer today, but she doesn't have any openings in the near future. I got on her list.
Thanks to all, again, but especially to Eric and to Kris. The two of you worked out a great system to keep Matthew fairly happy, and keep things running smoothly. I don't know how I'd get through this all if Eric wasn't such a super kid. I'd like to take all the credit, but we pretty much got him that way. Well, maybe we contributed a little....
I'm off to try to get some sleep (none last night -- Greg had a rough night). More tomorrow.
AK
Our Hero is doing OK. He got off the oxygen today, and they're talking about moving him off of ICU, subject to (as usual) bed availability. (Seems like our lives for past 6 months have revolved around waiting for a bed at Barnes.) But, he's really weak, and still a wee bit confused. I don't blame him. I found ICU disorienting, and I got to leave every once in a while. They say there's a condition called ICU psychosis, and I believe it. I was only gone about an hour, on the road home, and my mind cleared and I was able to think much better. Greg is also eating some, but its hard. The tray they sent up yesterday was inedible. "Chopped steak" they had the nerve to call it. Looked (and tasted) like something Eric hits around on the driveway with his hockey sticks.
The exhaustion is setting in, so I'll make this short. I'll get more details to you over the weekend. I'm still trying to figure out how I'm going to make sure Greg has someone with him at all times in St. Louis, still go to work, and make sure Matthew doesn't completely lose it. I called the duplex lady from last summer today, but she doesn't have any openings in the near future. I got on her list.
Thanks to all, again, but especially to Eric and to Kris. The two of you worked out a great system to keep Matthew fairly happy, and keep things running smoothly. I don't know how I'd get through this all if Eric wasn't such a super kid. I'd like to take all the credit, but we pretty much got him that way. Well, maybe we contributed a little....
I'm off to try to get some sleep (none last night -- Greg had a rough night). More tomorrow.
AK
Thursday, July 2, 2009
Baby Steps?
Well, right after I posted yesterday, they came in and said they don't think its pneumonia per se, but rather congestive heart failure -- that's why he's got the fluid on his lungs. Then, this morning they said that his blood cultures came back positive . So, once again, I'm not sure what's really going on. And evidently, neither are they. This means he has an infection of some sort, although they don't exactly know what kind. It can take a few days to grow enough to find out. But, with all the antibiotics they're giving him, he's pretty well covered for everything. They're also putting him on another antibiotic, and a low sodium diet. He's thrilled.
Greg is still in ICU, but seems a little better today. Most of the confusion is gone, and he appears a little stronger. They're going to let him try sitting in a chair later today. We just have to wait until there are enough people free to help, to guard against a fall. He's still pretty weak, and even needs help rolling over in the bed. His platelets continue to be an issue. He was at 12 yesterday, and after they transfused him, he was at 8. This is turning into a pattern. One transfusion puts him up, the next makes him drop. I haven't seen the BMT folks yet today to ask how significant this is, but they told us all along the platelets are the last to come back, and that one of the major reasons he has to hang around town after discharge is because he'll need platelet support for a long time. Dr. Vij stopped by briefly yesterday. He said that this is not GVHD, that the rash is from low platelets. (The little blood vessels close to the surface rupture).
I don't think we're looking at discharge anytime soon. (Greg disagrees. He wants to go home now!). I'm trying to make decisions, but its hard. Skibby is coming tomorrow to stay with Greg so I can go home for the weekend and regroup. I'll be glad to see the boys and get some sleep. I think I've slept about a total of 6 hours since I got here. In other words, everything is normal in that department.
Since I started writing this, they got him up and into a chair. He's eating his pudding (yum!) and feeling pretty good. Its progress, anyway.
Thanks again to all for everything. Keep those prayers coming!
Love,
Ann
P.S. Pam: thanks for the offer. I just don't know what I'm doing yet. I'll let you know. Is there a parade and breakfast Sat. a.m. in the neighborhood? Eric says he hasn't seen anything, so we're not sure if we should decorate Matthew's bike? (and helmet?)
Greg is still in ICU, but seems a little better today. Most of the confusion is gone, and he appears a little stronger. They're going to let him try sitting in a chair later today. We just have to wait until there are enough people free to help, to guard against a fall. He's still pretty weak, and even needs help rolling over in the bed. His platelets continue to be an issue. He was at 12 yesterday, and after they transfused him, he was at 8. This is turning into a pattern. One transfusion puts him up, the next makes him drop. I haven't seen the BMT folks yet today to ask how significant this is, but they told us all along the platelets are the last to come back, and that one of the major reasons he has to hang around town after discharge is because he'll need platelet support for a long time. Dr. Vij stopped by briefly yesterday. He said that this is not GVHD, that the rash is from low platelets. (The little blood vessels close to the surface rupture).
I don't think we're looking at discharge anytime soon. (Greg disagrees. He wants to go home now!). I'm trying to make decisions, but its hard. Skibby is coming tomorrow to stay with Greg so I can go home for the weekend and regroup. I'll be glad to see the boys and get some sleep. I think I've slept about a total of 6 hours since I got here. In other words, everything is normal in that department.
Since I started writing this, they got him up and into a chair. He's eating his pudding (yum!) and feeling pretty good. Its progress, anyway.
Thanks again to all for everything. Keep those prayers coming!
Love,
Ann
P.S. Pam: thanks for the offer. I just don't know what I'm doing yet. I'll let you know. Is there a parade and breakfast Sat. a.m. in the neighborhood? Eric says he hasn't seen anything, so we're not sure if we should decorate Matthew's bike? (and helmet?)
Wednesday, July 1, 2009
Setback
Greg is back in the hospital, in ICU. I couldn't get ahold of him all day Monday. I got concerned and finally talked the staff at Hope Lodge into unlocking his room to check on him. He was unresponsive so they called the EMTs. They took him to Barnes Emergency and I jumped in the car & got here about 12:30 a.m Tuesday. He was very disoriented and confused. His blood sugar was 20 (100+ is normal). We spent the night in the ER and yesterday morning, he was placed in ICU. Long story short, they think the blood sugar thing was a symptom, not a cause. They're treating him for infection, and he has fluid on the lungs, which they're treating as pneumonia. But, this morning's theory is congestive heart failure as he still has way too much fluid on board. This weekend he could barely get his shoes on. The confusion is getting better, and he's much improved this morning. They're going to do an echocardiogram, and a spinal MRI. Someone from radiology read the CT scan they did yesterday, saw his C1-3 vertebrae, and freaked. They've put him in a cervical collar again. I can't get any answers on that. My theory is that they're seeing the scar tissue from 5 years ago, when his spine had all those tumors. But, they're keeping the collar on now as a precaution. I can't tell you how thrilled he is about that. I'm being rather pushy for someone to tell me that he really needs it. But, nothing so far. They may take it off after the MRI. He's really uncomfortable.
He also has very low platelets (what else is new?) and a terrible skin rash that looks like burns, mostly on his legs, but also on his lower back & a few other places. Also a little GI bleeding. My theory is that all of this, coupled with the pulmonary issues, adds up to Graft-Versus-Host disease. However, no one from oncology has been here yet to see him. Plus, I get the impression that GVHD is diagnosed only after they rule everything else out.
They boys are camping out at home, with Eric taking care of Matthew unless he's at work or school. Then Matthew goes to day care or the Wherely's. This was Eric's idea. He's a great big brother. I just hope it doesn't overwhelm him. Last night they had a pajama party in our room. I guess that means the bed is full of popcorn again.
Love,
Ann & Greg
P.S. I forgot to mention how horribly rude the ER phone staff was to me on Monday night during my drive up here. Wouldn't give me ANY information, practically called me a liar when I said I was Greg's wife, hung up on me once, kept putting me on hold when I was in the middle of a sentence and not coming back the other times, and flat out refused to take any medical history from me. Super ugly and rude. "HIPPA regulations!" I didn't know HIPPA says you have to be a bitch. I'm going to see about how I lodge a complaint. Maybe Greg will get to rename this hospital yet!
He also has very low platelets (what else is new?) and a terrible skin rash that looks like burns, mostly on his legs, but also on his lower back & a few other places. Also a little GI bleeding. My theory is that all of this, coupled with the pulmonary issues, adds up to Graft-Versus-Host disease. However, no one from oncology has been here yet to see him. Plus, I get the impression that GVHD is diagnosed only after they rule everything else out.
They boys are camping out at home, with Eric taking care of Matthew unless he's at work or school. Then Matthew goes to day care or the Wherely's. This was Eric's idea. He's a great big brother. I just hope it doesn't overwhelm him. Last night they had a pajama party in our room. I guess that means the bed is full of popcorn again.
Speaking of popcorn, I have to wear the HazMat suit all the time I'm in the room (ICU rules). (I'm going to relate this to popcorn -- just bear with me). The gown and gloves are really hot -- especially when I'm trying to sleep. Its also really hard to type with the gloves on. But, I have found one advantage -- cheese popcorn. I had it for dinner last night. When you're done, you just change gloves -- no orange fingers. So I got that going for me.
I'm definitely urban camping now. Hope Lodge made me check Greg out yesterday. Technically, family isn't supposed to stay in ICU, but the nurses took pity on me since I'm homeless. I have my very own recliner, which was really hard to get. I actually managed a few hours of sleep last night, after only about 20 minutes the night before. I'm going to try to find a place to shower at some point -- I think I have to go to the ransplant unit. Hope Lodge says he can come back, but he must have someone with him 24/7 when he does. I guess I'll just sell the boys for medical experiments and quit my job. Does the hospital sell lottery tickets? Actually, we have a few ideas, but its hard to make any plans right now. I have a feeling he's going to be here a while.
I'll post again, after they change their minds about everything they've told me so far. That usually happens around shift change (7 a.m. & p.m.). Until then, huge thanks to everyone for all the prayers, good wishes, mojo, karma, support and help. You're all keeping me just this side of a nervous breakdown. I can't tell you how much I appreciate that.
Love,
Ann & Greg
P.S. I forgot to mention how horribly rude the ER phone staff was to me on Monday night during my drive up here. Wouldn't give me ANY information, practically called me a liar when I said I was Greg's wife, hung up on me once, kept putting me on hold when I was in the middle of a sentence and not coming back the other times, and flat out refused to take any medical history from me. Super ugly and rude. "HIPPA regulations!" I didn't know HIPPA says you have to be a bitch. I'm going to see about how I lodge a complaint. Maybe Greg will get to rename this hospital yet!
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