It's been awhile since I posted anything about where we're at, medically.
This past week we had a meeting with the head of the Hematology team. I've been wanting to ask her some very serious questions but I've been afraid of the answers. One of the questions involves what our future is likely to look like, where Brian is concerned. I realize they know very little about the form of HUS Brian has, but I want an idea about what to expect, so nothing surprises us. Well, she didn't give me a very encouraging answer. Basically, she's sure his disease will follow the pattern of his cousins, whose case they are "investigating" so they have an idea of how to treat Brian's case. This answer means a few things for us. It means Brian's kidneys will eventually shut down, and he'll end up on dialysis and some point. And it means that even if he DOES get a kidney transplant, the disease will still run rampant in his blood and it will just attack the new kidneys. It means a very, very long and discouraging road for us.
The other question I asked was about the possibility the disease is genetic. Meaning: Is there a chance my kids will also have the same genetic disposition to the disease. The answer: yes. There is a very high chance that this disease is hereditary, given what's happened so far. So my kids will have to be tested at some point if Brian's. As a Mom, the nightmares of having sick kids started the instant I heard that. I have been in a constant state of panic since hearing that. Of course, we don't have the genetic test results back yet so we don't know for sure, but her thought is that the test will come back positive for familial HUS. It's a very, VERY scary thing for me and I haven't done very well at handling it.
Brian had a "Vortex" placed in his chest. It's an uncommon type of a portacath that has two "tubes" (I don't know the proper terminology) coming out. The nurses have struggled so much with his veins that they had to do SOMETHING to make it easier. Every three days he has to get the line flushed so infection won't occur, so we've added that to our "medical calendar". At least he only has to go to the local hospital, not an hour and a half away! And so far he's seeming to do quite well receiving a PLEX treatment every 7 days. I don't know that we could handle any more than that (the week where he had three PLEX treatments in one week was brutal!!). But we'll do what we must.
This is getting long and I'm finding myself distracted, so I'll end it there!
Sunday, December 5, 2010
Wednesday, November 24, 2010
Discouraged
The past few weeks I have had way too many sleepless nights and I'm afraid it's catching up to me. Brian had surgery on Monday, something I was anxious about although it was a pretty standard surgery. It's a sign of what "normal life" will look like for us and I've been trying to live in denial a bit. There's no denying it now that he has a portacath and two tubes permanently hanging out of his chest.
After having three treatments in one week, his numbers went back up again - to our relief. We realized that he can't have a treatment every 14 days, he needs them more frequently than that. So they're currently trying every 10 days and if that doesn't work, he'll have a treatment once a week. He still has to have blood work two times a week, and now with a portacath in he has to have it flushed every three days. What a busy medical schedule he has! All of this means missed work, and it also means that he needs our car. That leaves me WITHOUT a car and without a way to go to appointments, drive Mercy to and from school (on really chilly days like today!) or run any errands I may have. It's starting to frustrate me.
Another daily struggle we've had is the childcare issue. If I want to go to the hospital WITH Brian, well, my choices are limited. Brian and I didn't like the idea of having to spend the day in Vancouver with the kiddos and no money in this weather, so on Monday Brian drove HIMSELF to VGH for his surgery and treatment. I didn't like that at all...
So currently we're trying to figure out all our options. Transportation. Income. Childcare. It's all in the works but it's all looking pretty... well, discouraging. Pray something good comes our way soon - we need a little bit of light right now!
After having three treatments in one week, his numbers went back up again - to our relief. We realized that he can't have a treatment every 14 days, he needs them more frequently than that. So they're currently trying every 10 days and if that doesn't work, he'll have a treatment once a week. He still has to have blood work two times a week, and now with a portacath in he has to have it flushed every three days. What a busy medical schedule he has! All of this means missed work, and it also means that he needs our car. That leaves me WITHOUT a car and without a way to go to appointments, drive Mercy to and from school (on really chilly days like today!) or run any errands I may have. It's starting to frustrate me.
Another daily struggle we've had is the childcare issue. If I want to go to the hospital WITH Brian, well, my choices are limited. Brian and I didn't like the idea of having to spend the day in Vancouver with the kiddos and no money in this weather, so on Monday Brian drove HIMSELF to VGH for his surgery and treatment. I didn't like that at all...
So currently we're trying to figure out all our options. Transportation. Income. Childcare. It's all in the works but it's all looking pretty... well, discouraging. Pray something good comes our way soon - we need a little bit of light right now!
Saturday, October 30, 2010
Prayer
Needed... again. Brian's numbers are not good at all right now. His platelet count is dropping significantly every day. I convinced him to get his blood checked tomorrow morning because I'm concerned. The hospital phoned and they want to see him three times next week. They were actually hoping to convince him to come in TOMORROW, but he is being difficult and he refused. I'm uncomfortable with that, but it's his choice. At least he agreed to have blood drawn to see where he's at. Tonight he doesn't look very good and I am anxious about it. I probably won't get much sleep tonight.
Pray I have peace, and pray that his numbers hold steady until his PLEX Monday, and that they jump up with his treatments. Also pray that he can finally manage to put some hours in at work - this is so hard on us financially!
Thanks friends...
Pray I have peace, and pray that his numbers hold steady until his PLEX Monday, and that they jump up with his treatments. Also pray that he can finally manage to put some hours in at work - this is so hard on us financially!
Thanks friends...
Sunday, September 26, 2010
Sincerest Apologies
So, where did we leave off? Brian's platelets were down. Then up. Then down again. His kidneys were starting to function better. His blood pressure was under control, and his feet were still swollen.
And now...
Platelets: Down again. Dangerously low. In fact, tomorrow morning we'll find out if he's being admitted again. He had a PLEX treatment on Thursday, and another one on Friday. Tomorrow he'll have a third one just to give his platelets a boost. If the first two treatments have done nothing, he'll be admitted on the spot until they can figure out how to get him to a normal level again.
Kidneys/creatinine: Levels are stable. Still not ideal, but much better than where they were. If his platelets don't come back up to a normal range, however, his kidneys will start having issues again. His feet are no longer swollen, and he's off almost all his water pills. This is a very good thing!
In a week I am off to Italy to take pictures for a friend's wedding. I'm so excited, but the Brian's physical issues have me nervous. I worry I'll fly off to a foreign country and then he'll end up in the hospital. What will happen to my kids? How will I know how he is? Yeah, it's a little bit unnerving.
Well, that's my life in a nutshell. One of these days I'll manage to get a few more pictures up. Uploading pictures has been an issue for me, especially now that my pictures' file sizes are so large! There has to be an easy way, and I'm determined to figure it out.
And now...
Platelets: Down again. Dangerously low. In fact, tomorrow morning we'll find out if he's being admitted again. He had a PLEX treatment on Thursday, and another one on Friday. Tomorrow he'll have a third one just to give his platelets a boost. If the first two treatments have done nothing, he'll be admitted on the spot until they can figure out how to get him to a normal level again.
Kidneys/creatinine: Levels are stable. Still not ideal, but much better than where they were. If his platelets don't come back up to a normal range, however, his kidneys will start having issues again. His feet are no longer swollen, and he's off almost all his water pills. This is a very good thing!
In a week I am off to Italy to take pictures for a friend's wedding. I'm so excited, but the Brian's physical issues have me nervous. I worry I'll fly off to a foreign country and then he'll end up in the hospital. What will happen to my kids? How will I know how he is? Yeah, it's a little bit unnerving.
Well, that's my life in a nutshell. One of these days I'll manage to get a few more pictures up. Uploading pictures has been an issue for me, especially now that my pictures' file sizes are so large! There has to be an easy way, and I'm determined to figure it out.
Tuesday, August 24, 2010
More
Wow has life ever gotten busy. With appointments, blood work, waiting for blood work results to find out if he has more appointments... Life has become a "waiting game".
Right now I'm sick. I'm supposed to be in bed feeling better but I've got too much to do to allow myself just to rest. The end of the month is almost upon us and I'm starting to feel anxious.
Brian's boss said he had a bit of work for him. Yes, I know he got laid off - but his boss said Brian could return to work VERY part time just to help him meet deadlines. So Brian was supposed to do a bit of work for him starting Monday. But Sunday night we got a phone-call informing us that his boss has now ended up in the hospital with his own health issues! So, no work. Which is a good thing - I don't think Brian was quite healthy enough to return to work.
Today we've gotten quite a few phone-calls regarding Brian's health issues. He had his blood work done Monday and it revealed some problems arising. His kidney function and platelet levels remain the same. But his hemoglobin has taken a nosedive and potassium levels are dangerously high. Oh and his cholesterol went really high too. Some of these issues are probably side-effects of the medications he's on, but now he's got a whole new set of symptoms that need treatment. So a shipment is arriving at our house in the next day or two of these treatments (one of which involves Brian giving himself needles!! A nurse will come and teach us what to do) And we're returning to VGH on Thursday to check in with the hematology team there, for the first time since his last PLEX treatment.
Crazy. This "new normal". I want my "old normal" back!
Pray:
- The kids, as I said, have been handling this all quite well. But Mercy is starting to have "Daddy separation anxiety" any time her Daddy has to go anywhere. I know this is a direct result of him being in the hospital. She doesn't talk about how things negatively affect her, but she starts to act out and get really insecure. She needs peace...
- That Brian's hemoglobin goes up, that his potassium level comes down, that the platelets will remain stable, and that the kidneys start functioning better again. And that the edema in his feet starts to go down (permanently, please!). That his blood pressure goes down to 120 or under without needing further medication, and that his cholesterol is controlled. Oh and that I learn how to cook foods that treat all of these issues naturally (it's a science and I'm thinking I need to take a class to learn!!)
- That I can remain healthy and... I guess... sane (?) during all of this! I need to keep my head on straight and it's hard some days. I can't afford to be sick, sad, worried, stressed, tired, etc. and right now I'm all of those things.
Right now I'm sick. I'm supposed to be in bed feeling better but I've got too much to do to allow myself just to rest. The end of the month is almost upon us and I'm starting to feel anxious.
Brian's boss said he had a bit of work for him. Yes, I know he got laid off - but his boss said Brian could return to work VERY part time just to help him meet deadlines. So Brian was supposed to do a bit of work for him starting Monday. But Sunday night we got a phone-call informing us that his boss has now ended up in the hospital with his own health issues! So, no work. Which is a good thing - I don't think Brian was quite healthy enough to return to work.
Today we've gotten quite a few phone-calls regarding Brian's health issues. He had his blood work done Monday and it revealed some problems arising. His kidney function and platelet levels remain the same. But his hemoglobin has taken a nosedive and potassium levels are dangerously high. Oh and his cholesterol went really high too. Some of these issues are probably side-effects of the medications he's on, but now he's got a whole new set of symptoms that need treatment. So a shipment is arriving at our house in the next day or two of these treatments (one of which involves Brian giving himself needles!! A nurse will come and teach us what to do) And we're returning to VGH on Thursday to check in with the hematology team there, for the first time since his last PLEX treatment.
Crazy. This "new normal". I want my "old normal" back!
Pray:
- The kids, as I said, have been handling this all quite well. But Mercy is starting to have "Daddy separation anxiety" any time her Daddy has to go anywhere. I know this is a direct result of him being in the hospital. She doesn't talk about how things negatively affect her, but she starts to act out and get really insecure. She needs peace...
- That Brian's hemoglobin goes up, that his potassium level comes down, that the platelets will remain stable, and that the kidneys start functioning better again. And that the edema in his feet starts to go down (permanently, please!). That his blood pressure goes down to 120 or under without needing further medication, and that his cholesterol is controlled. Oh and that I learn how to cook foods that treat all of these issues naturally (it's a science and I'm thinking I need to take a class to learn!!)
- That I can remain healthy and... I guess... sane (?) during all of this! I need to keep my head on straight and it's hard some days. I can't afford to be sick, sad, worried, stressed, tired, etc. and right now I'm all of those things.
Friday, August 20, 2010
Another Appointment
Another Doctor. This time a kidney specialist. Another prescription. Three, actually. One is supposed to take down the swelling in his feet, the other two are to help control his high blood pressure. Another order for blood work. Another explanation of the diagnosis. More new information to process. Another appointment with another clinic. Brian will be having to make appointments to visit the kidney disease clinic to learn how to manage life with damaged kidneys. Another new appointment with another specialist booked. Brian will also be having to do some follow-up with a hematologist. His new kidney specialist doesn't let his patients fall through the cracks.
And now I'm going to go back to another new day, and another to-do list.
And now I'm going to go back to another new day, and another to-do list.
Monday, August 16, 2010
Done
I'm so ready to be done with summer. Usually Summer is my favorite season of the year. Summer barbeques, visiting friends, camping, spending large amounts of time outside, swimming or splashing in water, fresh fruit...
But this Summer is different. I've spent way too much time in my car. NO time splashing or playing in water. Barely any barbeques because we have no money for food. The only time we visit with anyone seems to be when I'm trying to distract the kids, or when I'm dropping them off or picking them up so I can deal with Brian's medical stuff. We have, at least, had a LOT of fresh fruit. The kids and I are in fruit heaven! I am shocked at the amount of blueberries we eat in a day. A dear friend of mine has invited us over a few times and we eat their delicious blueberries right off the bush. She sends us home with blueberries and we feast on them for days (usually resulting in a few tummy aches but oh-so-worth it!!)
It's been an adjustment having Brian home with us. We're happy to have him home, of course, but it means constant anxiety for me. I don't like having to be the one keeping tabs on him and making sure he's doing okay. It was much more peaceful to have him taken care of at the hospital (is that horrible?) He looks awful today. His feet are at least twice, if not three times, their size. He winces with every step while trying to pretend it doesn't bother him. So he spends a lot of time sitting with his feet up and that's the way it has to be. Try explaining that to the kids!
I may or may not be going crazy. Lack of sleep, maybe.
I have nothing else of interest to say. Sorry my posts have been sounding discouraged lately - but that's just where I'm at right now! We're in a very tough spot, and I'm trying to figure out how to put the pieces back together and trying to regain some sanity for the sake of my family. I feel pulled in all kinds of directions.
But this Summer is different. I've spent way too much time in my car. NO time splashing or playing in water. Barely any barbeques because we have no money for food. The only time we visit with anyone seems to be when I'm trying to distract the kids, or when I'm dropping them off or picking them up so I can deal with Brian's medical stuff. We have, at least, had a LOT of fresh fruit. The kids and I are in fruit heaven! I am shocked at the amount of blueberries we eat in a day. A dear friend of mine has invited us over a few times and we eat their delicious blueberries right off the bush. She sends us home with blueberries and we feast on them for days (usually resulting in a few tummy aches but oh-so-worth it!!)
It's been an adjustment having Brian home with us. We're happy to have him home, of course, but it means constant anxiety for me. I don't like having to be the one keeping tabs on him and making sure he's doing okay. It was much more peaceful to have him taken care of at the hospital (is that horrible?) He looks awful today. His feet are at least twice, if not three times, their size. He winces with every step while trying to pretend it doesn't bother him. So he spends a lot of time sitting with his feet up and that's the way it has to be. Try explaining that to the kids!
I may or may not be going crazy. Lack of sleep, maybe.
I have nothing else of interest to say. Sorry my posts have been sounding discouraged lately - but that's just where I'm at right now! We're in a very tough spot, and I'm trying to figure out how to put the pieces back together and trying to regain some sanity for the sake of my family. I feel pulled in all kinds of directions.
Saturday, August 14, 2010
Meet Erin
That's not Erin, that's Brian. Erin is NOT the nurse behind him. This nurse is prepping the machine that, literally, is saving Brian's life.
This is Brian's feet. Or "balloons", as I call them.
This is the machine. Not to be confused with "the machine" from the Princess Bride. This machine doesn't hurt.
This is Erin. Erin is administering Benadryl before starting the PLEX procedure. "It's a LOT", she says.
This is how Brian feels when the Benadryl gets into his system. It makes him want to shake his head, roll his eyes back and forth, and say "Wow man".
This is Brian's blood. See the red tubes? They're not red, they're transparent. Blood is leaving Brian's body and going into the machine.
These are the plasma bags. Plasma is what's left when you remove red blood cells and white blood cells. This machine separates the cells from the plasma, adds new, donated plasma back to the cells and then puts it back into Brian's body.
It takes a lot of tubes to do what this machine does.
This was the part where I started to think about leaving. I don't like seeing blood leave my husband's body, even if it's just going into a machine.
This is how I found Brian when I returned a few hours later. The big, "orange-brown" bag in the back? That's Brian's plasma. It will be incinerated. It does no good to anybody.
This is Brian driving us home after picking the kids up, hours later. He's not allowed to drive after a treatment. He's loopy. But he's feeling better now, especially since they removed the tubes from his neck (better known as a Central Line) He is happy. He didn't like those tubes. When they removed those tubes I ran out of the room. I didn't like watching that.
Thursday, August 12, 2010
Back
And discouraged. So having a hard time figuring out how to make a post. Point form works best...
- Brian is home. I'm tentatively happy about that, seeing as he's not doing much better than he was in the hospital. His feet are HUGE. On Wednesday we had an appointment and the blood work showed that his platelets jumped to 220 - which is great! But his kidney function is down. I think the doctors are confused by that (platelets are fine, kidneys should be even better now...?)
- We also found out that Brian's boss has decided to lay him off. And we found out today that it's not a permanent layoff, but it's just until Brian gets back on his feet again. It works better this way for his boss, too, so it's a done deal. And that means we have no medical coverage whatsoever. I will NOT be taking the kids to see the dentist this summer, as I'd planned to. This also means whatever medication Brian needs to take to get better is not covered. Yikes...
- Tomorrow we go back into VGH. AGAIN. I'm so tired of driving. I want a day off. But Brian will be receiving another PLEX treatment and I'll just sit around and wait for him. It'll take most of the day. Then we find out what the "new plan" is. Pull the central line? Probably. Make more appointments for next week? Definitely. Possibly set a surgery date for a permanent line to be put in? A possibility. This Atypical HUS thing is a nasty disease to have. It doesn't go away. It pops back up when you least expect it to, and turns your life upside down again. The chance of recurrence is VERY high, especially in the next few months. Meaning the platelet issue will revisit us. The kidney issue looks like it's going to stick around for awhile, possibly being a permanent issue. I've been doing a lot of reading on aHUS and it scares me, and makes me wonder what the future holds for my family. I should probably stop reading.
Thanks for continuing to pray and think good thoughts. Trust me, I am SO grateful most of the time but tonight I just feel burdened.
- Brian is home. I'm tentatively happy about that, seeing as he's not doing much better than he was in the hospital. His feet are HUGE. On Wednesday we had an appointment and the blood work showed that his platelets jumped to 220 - which is great! But his kidney function is down. I think the doctors are confused by that (platelets are fine, kidneys should be even better now...?)
- We also found out that Brian's boss has decided to lay him off. And we found out today that it's not a permanent layoff, but it's just until Brian gets back on his feet again. It works better this way for his boss, too, so it's a done deal. And that means we have no medical coverage whatsoever. I will NOT be taking the kids to see the dentist this summer, as I'd planned to. This also means whatever medication Brian needs to take to get better is not covered. Yikes...
- Tomorrow we go back into VGH. AGAIN. I'm so tired of driving. I want a day off. But Brian will be receiving another PLEX treatment and I'll just sit around and wait for him. It'll take most of the day. Then we find out what the "new plan" is. Pull the central line? Probably. Make more appointments for next week? Definitely. Possibly set a surgery date for a permanent line to be put in? A possibility. This Atypical HUS thing is a nasty disease to have. It doesn't go away. It pops back up when you least expect it to, and turns your life upside down again. The chance of recurrence is VERY high, especially in the next few months. Meaning the platelet issue will revisit us. The kidney issue looks like it's going to stick around for awhile, possibly being a permanent issue. I've been doing a lot of reading on aHUS and it scares me, and makes me wonder what the future holds for my family. I should probably stop reading.
Thanks for continuing to pray and think good thoughts. Trust me, I am SO grateful most of the time but tonight I just feel burdened.
Saturday, August 7, 2010
Prayer
Here's how you can pray today:
- for energy for me. I don't feel free to go into it on my blog, but I've been dealing with some other major issues that came up as a result of Brian going into the hospital. On top of dealing with suddenly playing single Mom, trying to provide for the kids and I, and figuring out how to handle Brian being in the hospital.
- For God's timing. I don't know why it works out this way, but I feel like my timing is off these days. With little things like the ONLY time I bring the cat away to be dealt with is the time that they're closed, among other things. I time everything wrong. And everything seems to happen at the wrong time. Today was tough. I decided to take a day for the kids and I. Just relax, catch our breath. Enjoy each others company. Pretend it's summer. And then today ended up being the first day Brian was released on a day pass. I should be happy, right? But it means putting all my other "plans" on hold to hit the road yet again. I'm to tired to be on the road again...
- Brian's platelet count went down today. Not good news. I've been trying to tell him to stop getting ahead of himself (ie telling people he may be home this weekend) because it's still very much day to day. Today was the perfect example of that. You just never know. Anyway, with his count being down, I'm not quite sure what that means. Maybe PLEX every day again? Maybe just doing it every second day for awhile and see what happens? We'll see.
- Thank you for continued prayers, support, and words of encouragement. I feel surrounded by loving arms right now and I am positive this is an extension of how God feels about me right now. I know, through all this, how much He loves me and my kids. I am constantly reminded of that. Even when I'm angry, or grumpy, or down.
- for energy for me. I don't feel free to go into it on my blog, but I've been dealing with some other major issues that came up as a result of Brian going into the hospital. On top of dealing with suddenly playing single Mom, trying to provide for the kids and I, and figuring out how to handle Brian being in the hospital.
- For God's timing. I don't know why it works out this way, but I feel like my timing is off these days. With little things like the ONLY time I bring the cat away to be dealt with is the time that they're closed, among other things. I time everything wrong. And everything seems to happen at the wrong time. Today was tough. I decided to take a day for the kids and I. Just relax, catch our breath. Enjoy each others company. Pretend it's summer. And then today ended up being the first day Brian was released on a day pass. I should be happy, right? But it means putting all my other "plans" on hold to hit the road yet again. I'm to tired to be on the road again...
- Brian's platelet count went down today. Not good news. I've been trying to tell him to stop getting ahead of himself (ie telling people he may be home this weekend) because it's still very much day to day. Today was the perfect example of that. You just never know. Anyway, with his count being down, I'm not quite sure what that means. Maybe PLEX every day again? Maybe just doing it every second day for awhile and see what happens? We'll see.
- Thank you for continued prayers, support, and words of encouragement. I feel surrounded by loving arms right now and I am positive this is an extension of how God feels about me right now. I know, through all this, how much He loves me and my kids. I am constantly reminded of that. Even when I'm angry, or grumpy, or down.
Thursday, August 5, 2010
Blah
That describes how I feel about driving around endlessly in this heat in a car with no air conditioning!
Yesterday was a big day for Brian. He got some encouraging news about possibly being on the fast track towards going home. But it all depended on how he'd respond to a skipped PLEX treatment yesterday. This morning he woke up and had his blood drawn to see where his platelets were.
Let me rewind a bit... Yesterday, while I was visiting Brian, I asked him if he knew what his platelet count was when he FIRST arrived at VGH. He asked the nurse that had been seeing to his vitals, and she gave us some interesting info. The normal range is 150-400 (thousand). When Brian came to the 10th floor, his platelet count was 77. She believed it had been somewhere in the 60's when he was in urgent care, and it was dropping fast. Basically, if your platelet count gets too low you can bleed out. Sometimes internally. (Which explains all the questions about nosebleeds, bruising, etc) Anyway, after some of his PLEX treatments, his count went up to 152. Low enough on the normal side to still be a concern. The following day it was in the 170's. And the next - 190. This morning, after skipping a PLEX, it was still 190. So it hadn't dropped, but if he didn't get a PLEX treatment today it might have and then he'd start crashing all over again.
So they gave him a PLEX treatment, and tomorrow they'll skip it again. And wait and see. The fact that he's getting PLEX every second day now is progress, and I hope the platelet numbers keep going up (even slowly!)
In other good news... The kidney doctors signed off on him yesterday!!! That mean's his kidneys are functioning well enough that they don't need to see him anymore! Now Brian is just dealing with hematology. His kidneys are functioning at 80%, which is okay. They may stay that way, or they may slowly get better. Either way, people have one kidney removed and function just fine at 50%, so he should be fine!
Well, that's the news of the day. I will try to see him again tomorrow but I've been SO busy taking care of everything on my end here that I don't know. I haven't even really spoken to him today yet - wierd.
Pray:
- That platelet levels keep going UP!
- For sleep - it's loud and his roommate has a machine that beeps a lot. He's complained that he doesn't get a decent sleep at night.
- For the kids and I, for God's continued provision. (We have been so blessed, and it's been such a lesson in trust)
- That his kidney function keeps picking up - the swollen feet thing, I'm sure, is getting old.
Yesterday was a big day for Brian. He got some encouraging news about possibly being on the fast track towards going home. But it all depended on how he'd respond to a skipped PLEX treatment yesterday. This morning he woke up and had his blood drawn to see where his platelets were.
Let me rewind a bit... Yesterday, while I was visiting Brian, I asked him if he knew what his platelet count was when he FIRST arrived at VGH. He asked the nurse that had been seeing to his vitals, and she gave us some interesting info. The normal range is 150-400 (thousand). When Brian came to the 10th floor, his platelet count was 77. She believed it had been somewhere in the 60's when he was in urgent care, and it was dropping fast. Basically, if your platelet count gets too low you can bleed out. Sometimes internally. (Which explains all the questions about nosebleeds, bruising, etc) Anyway, after some of his PLEX treatments, his count went up to 152. Low enough on the normal side to still be a concern. The following day it was in the 170's. And the next - 190. This morning, after skipping a PLEX, it was still 190. So it hadn't dropped, but if he didn't get a PLEX treatment today it might have and then he'd start crashing all over again.
So they gave him a PLEX treatment, and tomorrow they'll skip it again. And wait and see. The fact that he's getting PLEX every second day now is progress, and I hope the platelet numbers keep going up (even slowly!)
In other good news... The kidney doctors signed off on him yesterday!!! That mean's his kidneys are functioning well enough that they don't need to see him anymore! Now Brian is just dealing with hematology. His kidneys are functioning at 80%, which is okay. They may stay that way, or they may slowly get better. Either way, people have one kidney removed and function just fine at 50%, so he should be fine!
Well, that's the news of the day. I will try to see him again tomorrow but I've been SO busy taking care of everything on my end here that I don't know. I haven't even really spoken to him today yet - wierd.
Pray:
- That platelet levels keep going UP!
- For sleep - it's loud and his roommate has a machine that beeps a lot. He's complained that he doesn't get a decent sleep at night.
- For the kids and I, for God's continued provision. (We have been so blessed, and it's been such a lesson in trust)
- That his kidney function keeps picking up - the swollen feet thing, I'm sure, is getting old.
Wednesday, August 4, 2010
Waiting Game
I am just loving point form these days...
- Brian is waiting for a team of specialists to decide what to do next. They had a meeting yesterday to discuss a few cases, including Brian's, and will decide what's best. So today we'll find out what the near future holds.
- Brian has been feeling better and better. The PLEX treatments have helped normalize everything in his body (with the exception of his kidney function, which can actually stay at quite a low level without hurting anything) With that said, he DID have one blip in his BP - it went up to about 170 at one point. Hopefully that was just a momentary thing and not a sign of it going out of control again.
- One of the specialists called me to explain things to me from his perspective. It was a tough conversation. He said they're now classifying it Atypical HUS (Hemolytic Uremic Syndrome) and it's so rare they don't quite know how to treat it. He said the PLEX is working short term, at least, and the hope is that it'll work long term. But they don't know. Everything is still really up in the air. He says the biggest indicator of how Brian is actually doing is his kidney function, which has not improved significantly enough for them to be hopeful yet. In fact, he has lost a LOT of his kidney function and it may be permanent, or it may improve over time. The improvements they've seen have come SO slowly (even for an Atypical HUS patient) that his hospital stay will be awhile yet. I asked him what we'd do if the PLEX doesn't work. Kidney transplant? He said no - the disease causes blood clots that have ruined an otherwise healthy set of kidneys. If new kidneys were put in, the blood clots will do the same damage to the NEW kidneys.
- There is still a chance Brian's genes have something to do with it. They are still investigating his cousin in ON to see if there's a link there, but have been unable to speak to the specialist there. I was told, also, that if there IS a link we won't know if it's been passed down to my kids. Testing for this specific gene only happens in very few "testing centres" in the world. We could make it happen, but it would probably cost us a lot of money.
Pray:
- for wisdom for Brian's doctors. Apparently there's a bit of a "shift change" happening and Brian will be having a new set of doctors working on the case (hence the meeting yesterday, I believe) A fresh set of doctors may open up new ideas/treatments. Here's hoping.
- That Brian's kidneys function better and better every day. That the damage that's been done isn't permanent.
- That his BP stays stable
- Again, for the kids and I while I manage things at home here. Pray for ENERGY for me! And for God's continued provision.
- Brian is waiting for a team of specialists to decide what to do next. They had a meeting yesterday to discuss a few cases, including Brian's, and will decide what's best. So today we'll find out what the near future holds.
- Brian has been feeling better and better. The PLEX treatments have helped normalize everything in his body (with the exception of his kidney function, which can actually stay at quite a low level without hurting anything) With that said, he DID have one blip in his BP - it went up to about 170 at one point. Hopefully that was just a momentary thing and not a sign of it going out of control again.
- One of the specialists called me to explain things to me from his perspective. It was a tough conversation. He said they're now classifying it Atypical HUS (Hemolytic Uremic Syndrome) and it's so rare they don't quite know how to treat it. He said the PLEX is working short term, at least, and the hope is that it'll work long term. But they don't know. Everything is still really up in the air. He says the biggest indicator of how Brian is actually doing is his kidney function, which has not improved significantly enough for them to be hopeful yet. In fact, he has lost a LOT of his kidney function and it may be permanent, or it may improve over time. The improvements they've seen have come SO slowly (even for an Atypical HUS patient) that his hospital stay will be awhile yet. I asked him what we'd do if the PLEX doesn't work. Kidney transplant? He said no - the disease causes blood clots that have ruined an otherwise healthy set of kidneys. If new kidneys were put in, the blood clots will do the same damage to the NEW kidneys.
- There is still a chance Brian's genes have something to do with it. They are still investigating his cousin in ON to see if there's a link there, but have been unable to speak to the specialist there. I was told, also, that if there IS a link we won't know if it's been passed down to my kids. Testing for this specific gene only happens in very few "testing centres" in the world. We could make it happen, but it would probably cost us a lot of money.
Pray:
- for wisdom for Brian's doctors. Apparently there's a bit of a "shift change" happening and Brian will be having a new set of doctors working on the case (hence the meeting yesterday, I believe) A fresh set of doctors may open up new ideas/treatments. Here's hoping.
- That Brian's kidneys function better and better every day. That the damage that's been done isn't permanent.
- That his BP stays stable
- Again, for the kids and I while I manage things at home here. Pray for ENERGY for me! And for God's continued provision.
Monday, August 2, 2010
Sunday Drive
I went for a Sunday drive yesterday - all the way into VGH! I was so tired I found myself having conversations with myself in my head, giving myself permission to just fall asleep. Then I'd shake my head and remind the inner voice that I was on the road. I made it there safely!
- Brian will be receiving his "PLEX" today (PLasma EXchange - I haven't known what to call it all along but it was most like a transfusion, so "Plasma transfusion" seemed the best option. Now I have the technical term!) He will be skipping tomorrow's to see what happens.
- His feet are swollen right up again since yesterday morning. I'm not sure what this is a sign of, but I'm hoping it doesn't mean his kidney function has gone down again.
- At his "Plex" yesterday, he had another reaction. Not nearly as severe this time, and they managed to complete it. When I saw him, his face was all puffy again and the Benadryl was making him sleepy.
- I may be going to the hospital again today, this time with Mercy along for the ride. We've been wanting to protect the kids from the way Daddy looks (tubes coming out of his neck and everything) and not scare them, but Mercy is really having a hard time dealing with not seeing Daddy. Phoning is no longer enough.
- Brian will be receiving his "PLEX" today (PLasma EXchange - I haven't known what to call it all along but it was most like a transfusion, so "Plasma transfusion" seemed the best option. Now I have the technical term!) He will be skipping tomorrow's to see what happens.
- His feet are swollen right up again since yesterday morning. I'm not sure what this is a sign of, but I'm hoping it doesn't mean his kidney function has gone down again.
- At his "Plex" yesterday, he had another reaction. Not nearly as severe this time, and they managed to complete it. When I saw him, his face was all puffy again and the Benadryl was making him sleepy.
- I may be going to the hospital again today, this time with Mercy along for the ride. We've been wanting to protect the kids from the way Daddy looks (tubes coming out of his neck and everything) and not scare them, but Mercy is really having a hard time dealing with not seeing Daddy. Phoning is no longer enough.
Saturday, July 31, 2010
Room
I keep forgetting to mention that Brian is in room 10200 at VGH if anyone is interested in visiting him. I thought I should put the info out there! He's on the 10th floor (acute), section 10C when you get off the elevator, and room 10200 is the first one to your right. :)
Getting Away From it all
I went with my parents to visit Brian yesterday. My Mom had an appointment just across the street, so they invited me to drive in with them. We got there and phoned Brian, who was still getting his Plasma treatment. It ran late and we ended up being able to visit him for only 10 minutes in the end, but it was nice to get a quick update anyway.
They are still not entirely sure on the TTP diagnosis. Brian's case is SO rare and so different from anything they've seen that they still aren't quite sure. So there's no guarantee it'll respond to the plasma treatments the same way most TTP cases would. The doctors are still researching the case of Brian's cousin (in TO) who also has TTP to see if there's a familial connection to this disorder.
On Monday (possibly Tuesday) they will skip a plasma treatment and see if Brian remains stable. But for the rest of this weekend, he will continue getting his treatment every day and go on like normal. He may not see his regular doctor all weekend, so there will be nothing exciting going on until the weekend is over.
So... the kids and I are going away. Possibly for the night. We need a distraction, and we're going to go visit friends at their trailer closeby. We won't have access to our phone, or internet, and I think the break will be good.
Mercy had a heart-wrenching breakdown yesterday. I have never seen such heaving sobs from my five year old. I didn't know what to do, how to comfort her. She was begging to see her Daddy. She was begging me to tell him to come home. She had just gotten in trouble for torturing Koby and screaming at him. I have never seen this behavior from her, and I know it's because of what's going on. I try to protect them and distract them from all of this but I just can't. She's too smart. With wracking sobs she asked me to phone her Daddy, so I got the two of them on the phone to have a big talk. She felt better, somewhat, after that. But the crying continued well into the night. This morning she has a puffy, red face. My poor girl...
So a distraction today will be a very good thing.
How you can continue to pray:
- for Mercy, that she feels peace.
- Wisdom for me regarding whether or not bringing my kids to see Brian in the hospital is a good idea. Their Daddy does not look good, and I don't want it to scare them. At the same time I know they need to see him.
- God's continued provision. Huge praise that our rent is taken care of! And yesterday I was worrying about small things I needed, like diapers, milk and eggs, and cried out to God asking for his help (I have such a hard time asking for help!) While Mercy was melting down there was a knock at the door and two very sweet people were dropping off a card with money inside. Enough to get the few necessary items I need! I have to remember that God is looking out for us and just trust. Pray for me in that area...
- Wisdom for the doctors. They need to figure out what this really is!
- That Brian's platelet levels stay stable when he misses his plasma treatment on Monday/Tuesday.
Praises, while I'm at it:
- Brian's kidneys are now functioning completely normal. There is still a bit of damage, but nothing to be worried about.
- Brian's blood pressure is officially MANAGED.
They are still not entirely sure on the TTP diagnosis. Brian's case is SO rare and so different from anything they've seen that they still aren't quite sure. So there's no guarantee it'll respond to the plasma treatments the same way most TTP cases would. The doctors are still researching the case of Brian's cousin (in TO) who also has TTP to see if there's a familial connection to this disorder.
On Monday (possibly Tuesday) they will skip a plasma treatment and see if Brian remains stable. But for the rest of this weekend, he will continue getting his treatment every day and go on like normal. He may not see his regular doctor all weekend, so there will be nothing exciting going on until the weekend is over.
So... the kids and I are going away. Possibly for the night. We need a distraction, and we're going to go visit friends at their trailer closeby. We won't have access to our phone, or internet, and I think the break will be good.
Mercy had a heart-wrenching breakdown yesterday. I have never seen such heaving sobs from my five year old. I didn't know what to do, how to comfort her. She was begging to see her Daddy. She was begging me to tell him to come home. She had just gotten in trouble for torturing Koby and screaming at him. I have never seen this behavior from her, and I know it's because of what's going on. I try to protect them and distract them from all of this but I just can't. She's too smart. With wracking sobs she asked me to phone her Daddy, so I got the two of them on the phone to have a big talk. She felt better, somewhat, after that. But the crying continued well into the night. This morning she has a puffy, red face. My poor girl...
So a distraction today will be a very good thing.
How you can continue to pray:
- for Mercy, that she feels peace.
- Wisdom for me regarding whether or not bringing my kids to see Brian in the hospital is a good idea. Their Daddy does not look good, and I don't want it to scare them. At the same time I know they need to see him.
- God's continued provision. Huge praise that our rent is taken care of! And yesterday I was worrying about small things I needed, like diapers, milk and eggs, and cried out to God asking for his help (I have such a hard time asking for help!) While Mercy was melting down there was a knock at the door and two very sweet people were dropping off a card with money inside. Enough to get the few necessary items I need! I have to remember that God is looking out for us and just trust. Pray for me in that area...
- Wisdom for the doctors. They need to figure out what this really is!
- That Brian's platelet levels stay stable when he misses his plasma treatment on Monday/Tuesday.
Praises, while I'm at it:
- Brian's kidneys are now functioning completely normal. There is still a bit of damage, but nothing to be worried about.
- Brian's blood pressure is officially MANAGED.
Friday, July 30, 2010
The view from Brian's 10th floor window
The beginning of Brian's hospital stay. He hadn't been diagnosed yet, so he was still tube-free!
His poor, swollen feet after the swelling had already come down quite a bit!!
Update from today's visit to come later, when the kiddos are in bed and not trying to climb on top of me while I type ;)
Thursday, July 29, 2010
Update
I didn't post at all yesterday! I'm still thinking in point form (I can barely even form paragraphs that are "pretty"!) So that's how I'll do this post, again.
-Yesterday was a tough one on Brian - he had his second plasma treatment and ended up having a severe allergic reaction to it. The stopped treatment and pumped him full of Benadryl. Over an hour later I got him on the phone and he still sounded awful. He could barely even talk- his mouth, throat, tongue and the back of his nose were still so swollen. He said his face puffed up as well - that would have been quite a sight! It was scary, he said. I think the reality of all of this is hitting him.
-The doctors are amazed that Brian is still able to walk right now. Whether he goes for treatment, or to get a central line placed, or to get a CAT scan - he WALKS out. Every test comes back saying that Brian is very sick, and yet he is still walking around. Amazing.
-Apart from the little "blip" yesterday, Brian seems to be responding to the treatment really well. They're going to do the treatment every day for 2 weeks and then reevaluate. After his first treatment (and a little bit of blood) Brian's platelet levels came right back up to normal. They didn't stay that way, but the fact that they DID was encouraging.
-They now believe he has a very rare form of TTP (TTP is rare to begin with!!) and they're labeling it a mix of TTP and HUS (I have yet to do the research on HUS, so providing a link for those of you reading this is actually getting ME on the ball about it!)
- I can't remember when, but at some point we got news that another member of Brian's family is on the list for a kidney transplant in ON because of TTP. There is a familial type of TTP, so this has become big news for the doctors (who have never seen such a rare case). They are hoping to work together with the doctors in ON to "study" this case and see if there is a link somewhere.
Prayer requests:
Pray that they keep working quickly! The doctors have been excellent, and Brian's care is better than I could have imagined.
Continue to pray for provision for the kids and I. I've been working on it, and I'm hoping that as much as things continue to be expedited medically, that they can be expedited financially for us and that I get things figured out quickly!
Pray for wisdom for me - with our living situation being up in the air to begin with, I'm wondering now if I should move us out of here so we don't have the financial burden of renting this place without any income. I have no idea where that takes us.
Pray that Brian begins to take this VERY seriously. He has a bad habit of downplaying everything. Pray he uses this time to evaluate where he's at so, when he's healthy and home again, he can STAY healthy.
-Yesterday was a tough one on Brian - he had his second plasma treatment and ended up having a severe allergic reaction to it. The stopped treatment and pumped him full of Benadryl. Over an hour later I got him on the phone and he still sounded awful. He could barely even talk- his mouth, throat, tongue and the back of his nose were still so swollen. He said his face puffed up as well - that would have been quite a sight! It was scary, he said. I think the reality of all of this is hitting him.
-The doctors are amazed that Brian is still able to walk right now. Whether he goes for treatment, or to get a central line placed, or to get a CAT scan - he WALKS out. Every test comes back saying that Brian is very sick, and yet he is still walking around. Amazing.
-Apart from the little "blip" yesterday, Brian seems to be responding to the treatment really well. They're going to do the treatment every day for 2 weeks and then reevaluate. After his first treatment (and a little bit of blood) Brian's platelet levels came right back up to normal. They didn't stay that way, but the fact that they DID was encouraging.
-They now believe he has a very rare form of TTP (TTP is rare to begin with!!) and they're labeling it a mix of TTP and HUS (I have yet to do the research on HUS, so providing a link for those of you reading this is actually getting ME on the ball about it!)
- I can't remember when, but at some point we got news that another member of Brian's family is on the list for a kidney transplant in ON because of TTP. There is a familial type of TTP, so this has become big news for the doctors (who have never seen such a rare case). They are hoping to work together with the doctors in ON to "study" this case and see if there is a link somewhere.
Prayer requests:
Pray that they keep working quickly! The doctors have been excellent, and Brian's care is better than I could have imagined.
Continue to pray for provision for the kids and I. I've been working on it, and I'm hoping that as much as things continue to be expedited medically, that they can be expedited financially for us and that I get things figured out quickly!
Pray for wisdom for me - with our living situation being up in the air to begin with, I'm wondering now if I should move us out of here so we don't have the financial burden of renting this place without any income. I have no idea where that takes us.
Pray that Brian begins to take this VERY seriously. He has a bad habit of downplaying everything. Pray he uses this time to evaluate where he's at so, when he's healthy and home again, he can STAY healthy.
Tuesday, July 27, 2010
Drowning
Today was a very bad day. Brian's diagnosis came in late afternoon and it's not good. He does have TTP (Thrombotic thrombocytopenic purpura) and will be receiving Plasmapheresis treatment until he is recovered. This can take up to 8 weeks, with another few months recovery after the platelet count is normal.
So, it looks like we're in for the long haul.
Prayer requests:
Peace for me and the kids. Somehow I have to tell them that Daddy isn't coming home anytime soon.
Financial help. We have such low income and no insurance or help in anyway.
Strength for me. This has been hard, to put it lightly.
That Brian recovers quickly.
I can't even think of anything more at the moment. I'll be taking it a day at a time right now...
So, it looks like we're in for the long haul.
Prayer requests:
Peace for me and the kids. Somehow I have to tell them that Daddy isn't coming home anytime soon.
Financial help. We have such low income and no insurance or help in anyway.
Strength for me. This has been hard, to put it lightly.
That Brian recovers quickly.
I can't even think of anything more at the moment. I'll be taking it a day at a time right now...
Reprieve
My good friend is with my two kids at her house right now and I'm taking a moment for myself. Today I'm feeling AWFUL - the stress is starting to take a toll on me. But I don't have the time to feel ill, I have SO much to do! It's interesting, being both Mommy and Daddy right now. And I'm learning a lot. I'm also learning a lot about what I can handle when I have to. Yes, I CAN survive on 5 hours sleep. Yes, I CAN have anxiety due to bad news and continue to function. These are lessons I probably didn't need to learn, but I have anyway.
Brian has heard that the biopsy results will be in either this evening or tomorrow morning. If the hematologist doesn't hear anything by this evening he's going to personally phone to try to find out. He is SUCH a good doctor - he's the one that has been expediting everything so far.
While checking his heart (and his brain, and his lungs, and his spleen, liver, and kidneys) it was discovered that Brian has a bit of a heart murmur. So today he's also having an echo cardiogram to look into that a little further. It probably has absolutely no significance to his case, but it's something that needs to be looked at anyway. The ECG, and yet another ultrasound, takes place in just 15 minutes from now.
His BP continues to decline. Slowly, which is nice - if it goes down too quickly Brian feels quite ill. I still have not heard about his kidney function or the platelets, but I plan on phoning Brian soon and asking him to double check on that.
That's it for now. More to come this evening, I am sure.
Brian has heard that the biopsy results will be in either this evening or tomorrow morning. If the hematologist doesn't hear anything by this evening he's going to personally phone to try to find out. He is SUCH a good doctor - he's the one that has been expediting everything so far.
While checking his heart (and his brain, and his lungs, and his spleen, liver, and kidneys) it was discovered that Brian has a bit of a heart murmur. So today he's also having an echo cardiogram to look into that a little further. It probably has absolutely no significance to his case, but it's something that needs to be looked at anyway. The ECG, and yet another ultrasound, takes place in just 15 minutes from now.
His BP continues to decline. Slowly, which is nice - if it goes down too quickly Brian feels quite ill. I still have not heard about his kidney function or the platelets, but I plan on phoning Brian soon and asking him to double check on that.
That's it for now. More to come this evening, I am sure.
Monday, July 26, 2010
More Questions than Answers
I'll have to do this point form, because that's the only way my brain is working tonight!
- I spent the day at VGH with Brian, even though I'd only planned on spending half the day there.
- Brian's blood pressure was down. Then up. Then down again. Then up again... You get the picture. At this point it is still considered "unmanaged".
- His bp went up just before he was called in for his kidney biopsy, and they almost couldn't do it. It went down just before and they managed to get a sample. After 5 tries, I mean. No, Brian was not very comfortable after that.
- I almost passed out when he got back from his biopsy because I'm just dealing with it THAT well.
- I felt like I might pass out two other times. All I did was walk up a flight of stairs, and walk down the street carrying groceries for my "starving" husband. Yep, I sure deal with stress like a champ.
- Biopsy results will be in... who knows when..? Nobody really told us. Everything has, however, been expedited thus far so we hope it'll come in soon. Whenever "soon" is.
- The biopsy results, as we were told, "may or may not tell us what we need to know."
- Just before leaving to go find coffee (after Brian stood up for the first time since his biopsy. He had to lay still for 4 hours.) we were pulled back into his room by the hematology people. (We've seen so many doctors by now that I can't remember all the names I'm supposed to remember). Brian's platelet count has gone down even more than it did two days ago. This is a very serious concern. This is the reason he got an ambulance ride in a real hurry the other day. Right now it trumps the kidney issue and the bp issue.
- The stabilizing of his BP may or may not affect the platelet count. Just like it may or may not affect his kidney function. Or like the kidney function may or may not lower the BP.
- Brian still may or may not have something called TPP, which was the first thing suspected when he was at the first hospital. This afternoon we were told that Brian could not go home yet unless a diagnosis of TPP or renal failure due to prolonged high blood pressure has been decided. He was given an 80% chance that either of these conditions are fatal if left untreated.
- Brian STILL argued that he wants to come home.
- He will be staying at the hospital, much more long term than we originally suspected. He may not act like it, but he is very sick right now.
How can you pray?
- Pray the kidney biopsy comes back QUICKLY with a very concrete diagnosis
- While you're at it, pray the diagnosis is a simple one to treat ;)
- Pray that Brian stops fighting to leave the hospital. He needs to just rest and trust that his family is taken care of
- Pray that nothing that could go wrong at this point goes wrong. With everything being "up in the air" like it is, Brian is a bit of a walking time bomb. If whatever this is doesn't get treated soon, I'm very afraid of the consequences.
- Pray for the kids. They seem to be handling it very well but I know that Mercy, for one, internalizes everything. And pray that I can be the Mom they need through this and set their minds at ease.
(if you can read the links I posted, you are smarter than I am! It didn't make a whole lot of sense and I even know what I'm talking about! Look up TPP or renal failure yourself if it didn't make sense and if you want a clear picture of what we're dealing with. I'm usually such a research buff but I'm a bit of a zombie at the moment and can't provide much info for you!)
- I spent the day at VGH with Brian, even though I'd only planned on spending half the day there.
- Brian's blood pressure was down. Then up. Then down again. Then up again... You get the picture. At this point it is still considered "unmanaged".
- His bp went up just before he was called in for his kidney biopsy, and they almost couldn't do it. It went down just before and they managed to get a sample. After 5 tries, I mean. No, Brian was not very comfortable after that.
- I almost passed out when he got back from his biopsy because I'm just dealing with it THAT well.
- I felt like I might pass out two other times. All I did was walk up a flight of stairs, and walk down the street carrying groceries for my "starving" husband. Yep, I sure deal with stress like a champ.
- Biopsy results will be in... who knows when..? Nobody really told us. Everything has, however, been expedited thus far so we hope it'll come in soon. Whenever "soon" is.
- The biopsy results, as we were told, "may or may not tell us what we need to know."
- Just before leaving to go find coffee (after Brian stood up for the first time since his biopsy. He had to lay still for 4 hours.) we were pulled back into his room by the hematology people. (We've seen so many doctors by now that I can't remember all the names I'm supposed to remember). Brian's platelet count has gone down even more than it did two days ago. This is a very serious concern. This is the reason he got an ambulance ride in a real hurry the other day. Right now it trumps the kidney issue and the bp issue.
- The stabilizing of his BP may or may not affect the platelet count. Just like it may or may not affect his kidney function. Or like the kidney function may or may not lower the BP.
- Brian still may or may not have something called TPP, which was the first thing suspected when he was at the first hospital. This afternoon we were told that Brian could not go home yet unless a diagnosis of TPP or renal failure due to prolonged high blood pressure has been decided. He was given an 80% chance that either of these conditions are fatal if left untreated.
- Brian STILL argued that he wants to come home.
- He will be staying at the hospital, much more long term than we originally suspected. He may not act like it, but he is very sick right now.
How can you pray?
- Pray the kidney biopsy comes back QUICKLY with a very concrete diagnosis
- While you're at it, pray the diagnosis is a simple one to treat ;)
- Pray that Brian stops fighting to leave the hospital. He needs to just rest and trust that his family is taken care of
- Pray that nothing that could go wrong at this point goes wrong. With everything being "up in the air" like it is, Brian is a bit of a walking time bomb. If whatever this is doesn't get treated soon, I'm very afraid of the consequences.
- Pray for the kids. They seem to be handling it very well but I know that Mercy, for one, internalizes everything. And pray that I can be the Mom they need through this and set their minds at ease.
(if you can read the links I posted, you are smarter than I am! It didn't make a whole lot of sense and I even know what I'm talking about! Look up TPP or renal failure yourself if it didn't make sense and if you want a clear picture of what we're dealing with. I'm usually such a research buff but I'm a bit of a zombie at the moment and can't provide much info for you!)
Sunday, July 25, 2010
Twists and Turns
Today looked different than I'd anticipated, and I'm grateful for that. I spent much of the day with my good friend just... sitting. Being me. Allowing myself to relax a bit and ease my mind. After yesterday it was very much needed. I spent the morning at church, which delighted the kiddos. They love their church friends. Offers of help are coming in and I'm so grateful for all of you that are supporting our family right now. I can't even put it into words. In my weary state I feel a little bit like I'm being carried, in a way. That's the only way I can describe it.
Tomorrow morning I'm planning on being there as soon as I can, which means I'm getting up at 6:00am and starting my drive to VGH. I hope to be there when the Kidney specialist arrives - I'd like to hear what she has to say!
Tomorrow Brian is also getting the biopsy done. Scenario number 2 (the one where the kidney is affecting the high BP) is looking a little more likely, I suppose. I'd like to be there when he gets that done.
Tonight I found out that Brian's blood pressure has gone up again slightly. I'm hoping and praying that's just a little blip and that it'll go back down again. Again, I'll just have to wait until tomorrow. For now, the best thing I can do is go to sleep. I may have to convince Koby of that though - he's been coming out of his room after waking up and deciding that he's thirsty!
Tomorrow morning I'm planning on being there as soon as I can, which means I'm getting up at 6:00am and starting my drive to VGH. I hope to be there when the Kidney specialist arrives - I'd like to hear what she has to say!
Tomorrow Brian is also getting the biopsy done. Scenario number 2 (the one where the kidney is affecting the high BP) is looking a little more likely, I suppose. I'd like to be there when he gets that done.
Tonight I found out that Brian's blood pressure has gone up again slightly. I'm hoping and praying that's just a little blip and that it'll go back down again. Again, I'll just have to wait until tomorrow. For now, the best thing I can do is go to sleep. I may have to convince Koby of that though - he's been coming out of his room after waking up and deciding that he's thirsty!
Too Tired for Words
But I'll attempt some anyway. Yesterday was an emotional roller coaster. Brian was rushed to VGH with blood pressure staying at 220, and his hemoglobin plummeted at the same time. I'm not completely sure what that means, but it was serious enough that he got a very exciting ride in the ambulance, sirens screaming, all the way to the hospital.
VGH believes Brian's kidneys are shutting down because of his high blood pressure. Either that or his kidneys malfunctioning CAUSED the blood pressure to skyrocket. Chicken/egg thing. So they're lowering the blood pressure and checking him continuously to see if kidney function improves. If it doesn't, the next step is to get a kidney biopsy. Fun times.
I am happy that Gramma and Grandad are home! They arrived sometime late last night, hightailing it home from Saskatchewan to help me. I'll be going to church this morning and then dropping them off so I can head back into the hospital. Nothing exciting will probably happen until Monday morning. One doctor told Brian that Sunday is a very slow day, and all the specialist doctors will arrive on Monday. The kidney specialist (who is apparently very good) will see Brian then. I'm probably going to try to be there then.
So I'll probably have nothing to report for awhile on the Brian front!
Mercy and Koby still have no idea what's going on. I'm going to tell them a little bit today, with the hopes that it doesn't remind Mercy of the time Brian was in hospital for his back over a year ago. It took months to ease Mercy's mind after that.
I'm tired. I feel pulled in two different directions right now. I just have to pick and choose where I'm needed most, but I'd really love a break. I feel a bit zombie-like today after the day we had yesterday. But I sure am thankful for people that stepped in and took care of me and my kids when I couldn't.
Well, I can't figure out how to end this post so I'll just stop there. It's always good to stop where you feel thankful :)
VGH believes Brian's kidneys are shutting down because of his high blood pressure. Either that or his kidneys malfunctioning CAUSED the blood pressure to skyrocket. Chicken/egg thing. So they're lowering the blood pressure and checking him continuously to see if kidney function improves. If it doesn't, the next step is to get a kidney biopsy. Fun times.
I am happy that Gramma and Grandad are home! They arrived sometime late last night, hightailing it home from Saskatchewan to help me. I'll be going to church this morning and then dropping them off so I can head back into the hospital. Nothing exciting will probably happen until Monday morning. One doctor told Brian that Sunday is a very slow day, and all the specialist doctors will arrive on Monday. The kidney specialist (who is apparently very good) will see Brian then. I'm probably going to try to be there then.
So I'll probably have nothing to report for awhile on the Brian front!
Mercy and Koby still have no idea what's going on. I'm going to tell them a little bit today, with the hopes that it doesn't remind Mercy of the time Brian was in hospital for his back over a year ago. It took months to ease Mercy's mind after that.
I'm tired. I feel pulled in two different directions right now. I just have to pick and choose where I'm needed most, but I'd really love a break. I feel a bit zombie-like today after the day we had yesterday. But I sure am thankful for people that stepped in and took care of me and my kids when I couldn't.
Well, I can't figure out how to end this post so I'll just stop there. It's always good to stop where you feel thankful :)
Saturday, July 24, 2010
Ramblings
Nothing new on the Brian front - not that I know of anyway. I assume he's stuck in his little room again and that they're running the remainder of the tests. I'll try to phone in a little while but I know I won't get through. But I see him later today, so I should get a good grasp of what's going on then.
The kids and I are managing just fine. In appearance, anyway. I'm really good (bad?) at managing "crisis moments". You may remember over a year ago when Brian ended up in hospital with a back injury - I managed quite fine, thank you very much. Until *I* ended up in hospital a short time later! I think stress takes a toll on my body while I keep up appearances, or try to anyway.
Today I woke up too tired to get out of bed. I got up anyway, but now I'm too tired to blow dry my hair. Or make sandwiches. Or dress my children. I'm too tired. It's probably the anxiety I've been experiencing the last couple of days. I almost had an emotional meltdown last night but Mercy came out of her bedroom and I was done. I sucked it back up and have been rock steady ever since. That's me.
Anyway, the kids and I are heading out in a bit to go to a local fair. All smiles. I'll update about Brian when I get home, after I visit him this afternoon!
The kids and I are managing just fine. In appearance, anyway. I'm really good (bad?) at managing "crisis moments". You may remember over a year ago when Brian ended up in hospital with a back injury - I managed quite fine, thank you very much. Until *I* ended up in hospital a short time later! I think stress takes a toll on my body while I keep up appearances, or try to anyway.
Today I woke up too tired to get out of bed. I got up anyway, but now I'm too tired to blow dry my hair. Or make sandwiches. Or dress my children. I'm too tired. It's probably the anxiety I've been experiencing the last couple of days. I almost had an emotional meltdown last night but Mercy came out of her bedroom and I was done. I sucked it back up and have been rock steady ever since. That's me.
Anyway, the kids and I are heading out in a bit to go to a local fair. All smiles. I'll update about Brian when I get home, after I visit him this afternoon!
Friday, July 23, 2010
Phone Issues
I was trying to get a hold of Brian for half the night with no success. And only then I started to realize how BADLY I'm handling all of this! I almost fell apart. But I can't, for the sake of the kids - they still have no idea what's going on and it would be a dead giveaway if they came out of their bedrooms and discovered me crying!
My anxiety was lessened by a phone call from Brian. Finally. He hasn't been getting my calls - the room he's in has no cell phone service. But if he wanders around a bit (he's happy to report he found a TV room where he can sit and watch some shows!) his phone sometimes starts working again.
He is still not hooked up to IV's, neither is he receiving any medication. Two more tests need to be run, and that will take place tomorrow morning. My sweet friend Sara offered to take my kids for a bit tomorrow so I can pop over to deliver Brian's toothbrush and other essentials and I'll find out where things stand then. Until then, I'm hoping to attempt some sleep tonight. We'll see...
My anxiety was lessened by a phone call from Brian. Finally. He hasn't been getting my calls - the room he's in has no cell phone service. But if he wanders around a bit (he's happy to report he found a TV room where he can sit and watch some shows!) his phone sometimes starts working again.
He is still not hooked up to IV's, neither is he receiving any medication. Two more tests need to be run, and that will take place tomorrow morning. My sweet friend Sara offered to take my kids for a bit tomorrow so I can pop over to deliver Brian's toothbrush and other essentials and I'll find out where things stand then. Until then, I'm hoping to attempt some sleep tonight. We'll see...
Bad News
Brian has been hospitalized for at least a few days, probably much longer than that. His kidneys are shutting down, and they don't quite know the cause of it yet. They're monitoring his heart to see if it's a heart issue (so far everything's coming back negative) and he's had all kinds of tests run on him in a very short amount of time. Which is good, because he'll be getting treated quickly, but bad because it means he NEEDS to be treated quickly. It's that serious. Our doctor, when Brian started to argue with him about the need to be admitted, said that if Brian doesn't go to the hospital he will very likely die. Yikes. Not something we wanted to hear.
I stayed as long as I could stomach and went to Auntie Linda's to pick up my kids and come home. They have no idea that Daddy is in the hospital, and I plan on keeping it that way! When Brian was hospitalized over a year ago for his back, Mercy was traumatized for months. So I need to protect them as much as I can. With that said, it sure makes it difficult to pop by and visit him when I have my kids with me everywhere I go!
Anyway, kids screaming, fighting, and completely unaware that Mommy is about to lose it. Will post as things happen!
I stayed as long as I could stomach and went to Auntie Linda's to pick up my kids and come home. They have no idea that Daddy is in the hospital, and I plan on keeping it that way! When Brian was hospitalized over a year ago for his back, Mercy was traumatized for months. So I need to protect them as much as I can. With that said, it sure makes it difficult to pop by and visit him when I have my kids with me everywhere I go!
Anyway, kids screaming, fighting, and completely unaware that Mommy is about to lose it. Will post as things happen!
Thursday, July 22, 2010
No Call
We didn't hear from the doctor this evening, which is probably good news. Bad news is that Brian's feet (everything below the knees now, actually) have swelled to almost double their size tonight. We'll go see the doctor first thing in the morning. Brian is comfortable enough to be sleeping right now, so hopefully I'll manage to ease my anxiety enough to catch some zzz's myself!!
I Believe in the Power of Prayer
I haven't posted much lately, which means I probably have people only checking once a month or less. But here I am. Instead of posting beautiful pictures of our impromptu camping trip this past week, I'm asking for prayer.
While camping, Brian started experiencing some odd symptoms. They've gotten worse since coming home. Alarmingly so. He got some blood work done this morning and just this evening I heard an urgent message from our doctor saying he needs to talk to Brian tonight and will continue trying to get a hold of us until he can get through. It is not good news, whatever has been discovered.
Please pray it's nothing too serious and that it can be "corrected" without any huge medical intervention. I'll keep any of you, my blog readers, posted. Thanks.
While camping, Brian started experiencing some odd symptoms. They've gotten worse since coming home. Alarmingly so. He got some blood work done this morning and just this evening I heard an urgent message from our doctor saying he needs to talk to Brian tonight and will continue trying to get a hold of us until he can get through. It is not good news, whatever has been discovered.
Please pray it's nothing too serious and that it can be "corrected" without any huge medical intervention. I'll keep any of you, my blog readers, posted. Thanks.
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