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!)
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